case study of someone with copd

COPD Case Study: Patient Diagnosis and Treatment (2024)

by John Landry, BS, RRT | Updated: May 16, 2024

Chronic obstructive pulmonary disease (COPD) is a progressive lung disease that affects millions of people around the world. It is primarily caused by smoking and is characterized by a persistent obstruction of airflow that worsens over time.

COPD can lead to a range of symptoms, including coughing, wheezing, shortness of breath, and chest tightness, which can significantly impact a person’s quality of life.

This case study will review the diagnosis and treatment of an adult patient who presented with signs and symptoms of this condition.

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COPD Clinical Scenario

A 56-year-old male patient is in the ER with increased work of breathing. He felt mildly short of breath after waking this morning but became extremely dyspneic after climbing a few flights of stairs. He is even too short of breath to finish full sentences. His wife is present in the room and revealed that the patient has a history of liver failure, is allergic to penicillin, and has a 15-pack-year smoking history. She also stated that he builds cabinets for a living and is constantly required to work around a lot of fine dust and debris.

Physical Findings

On physical examination, the patient showed the following signs and symptoms:

• His pupils are equal and reactive to light.
• He is alert and oriented.
• He is breathing through pursed lips.
• His trachea is positioned in the midline, and no jugular venous distention is present.

Vital Signs

• Heart rate: 92 beats/min
• Respiratory rate: 22 breaths/min

Chest Assessment

• He has a larger-than-normal anterior-posterior chest diameter.
• He demonstrates bilateral chest expansion.
• He demonstrates a prolonged expiratory phase and diminished breath sounds during auscultation.
• He is showing signs of subcostal retractions.
• Chest palpation reveals no tactile fremitus.
• Chest percussion reveals increased resonance.
• His abdomen is soft and tender.
• No distention is present.

Extremities

• His capillary refill time is two seconds.
• Digital clubbing is present in his fingertips.
• There are no signs of pedal edema.
• His skin appears to have a yellow tint.

Lab and Radiology Results

• ABG results: pH 7.35 mmHg, PaCO2 59 mmHg, HCO3 30 mEq/L, and PaO2 64 mmHg.
• Chest x-ray: Flat diaphragm, increased retrosternal space, dark lung fields, slight hypertrophy of the right ventricle, and a narrow heart.
• Blood work: RBC 6.5 mill/m3, Hb 19 g/100 mL, and Hct 57%.

Based on the information given, the patient likely has chronic obstructive pulmonary disease (COPD) .

The key findings that point to this diagnosis include:

• Barrel chest
• A long expiratory time
• Diminished breath sounds
• Use of accessory muscles while breathing
• Digital clubbing
• Pursed lip breathing
• History of smoking
• Exposure to dust from work

What Findings are Relevant to the Patient’s COPD Diagnosis?

The patient’s chest x-ray showed classic signs of chronic COPD, which include hyperexpansion, dark lung fields, and a narrow heart.

This patient does not have a history of cor pulmonale ; however, the findings revealed hypertrophy of the right ventricle. This is something that should be further investigated as right-sided heart failure is common in patients with COPD.

The lab values that suggest the patient has COPD include increased RBC, Hct, and Hb levels, which are signs of chronic hypoxemia.

Furthermore, the patient’s ABG results indicate COPD is present because the interpretation reveals compensated respiratory acidosis with mild hypoxemia. Compensated blood gases indicate an issue that has been present for an extended period of time.

What Tests Could Further Support This Diagnosis?

A series of pulmonary function tests (PFT) would be useful for assessing the patient’s lung volumes and capacities. This would help confirm the diagnosis of COPD and inform you of the severity.

Note: COPD patients typically have an FEV1/FVC ratio of < 70%, with an FEV1 that is < 80%.

The initial treatment for this patient should involve the administration of low-flow oxygen to treat or prevent hypoxemia .

It’s acceptable to start with a nasal cannula at 1-2 L/min. However, it’s often recommended to use an air-entrainment mask on COPD patients in order to provide an exact FiO2.

Either way, you should start with the lowest possible FiO2 that can maintain adequate oxygenation and titrate based on the patient’s response.

Example: Let’s say you start the patient with an FiO2 of 28% via air-entrainment mask but increase it to 32% due to no improvement. The SpO2 originally was 84% but now has decreased to 80%, and his retractions are worsening. This patient is sitting in the tripod position and continues to demonstrate pursed-lip breathing. Another blood gas was collected, and the results show a PaCO2 of 65 mmHg and a PaO2 of 59 mmHg.

What Do You Recommend?

The patient has an increased work of breathing, and their condition is clearly getting worse. The latest ABG results confirmed this with an increased PaCO2 and a PaO2 that is decreasing.

This indicates that the patient needs further assistance with both ventilation and oxygenation .

Note: In general, mechanical ventilation should be avoided in patients with COPD (if possible) because they are often difficult to wean from the machine.

Therefore, at this time, the most appropriate treatment method is noninvasive ventilation (e.g., BiPAP).

Initial BiPAP Settings

In general, the most commonly recommended initial BiPAP settings for an adult patient include this following:

• IPAP: 8–12 cmH2O
• EPAP: 5–8 cmH2O
• Rate: 10–12 breaths/min
• FiO2: Whatever they were previously on

For example, let’s say you initiate BiPAP with an IPAP of 10 cmH20, an EPAP of 5 cmH2O, a rate of 12, and an FiO2 of 32% (since that is what he was previously getting).

After 30 minutes on the machine, the physician requested another ABG to be drawn, which revealed acute respiratory acidosis with mild hypoxemia.

What Adjustments to BiPAP Settings Would You Recommend?

The latest ABG results indicate that two parameters must be corrected:

• Increased PaCO2
• Decreased PaO2

You can address the PaO2 by increasing either the FiO2 or EPAP setting. EPAP functions as PEEP, which is effective in increasing oxygenation.

The PaCO2 can be lowered by increasing the IPAP setting. By doing so, it helps to increase the patient’s tidal volume, which increased their expired CO2.

Note: In general, when making adjustments to a patient’s BiPAP settings, it’s acceptable to increase the pressure in increments of 2 cmH2O and the FiO2 setting in 5% increments.

Oxygenation

To improve the patient’s oxygenation , you can increase the EPAP setting to 7 cmH2O. This would decrease the pressure support by 2 cmH2O because it’s essentially the difference between the IPAP and EPAP.

Therefore, if you increase the EPAP, you must also increase the IPAP by the same amount to maintain the same pressure support level.

Ventilation

However, this patient also has an increased PaCO2 , which means that you must increase the IPAP setting to blow off more CO2. Therefore, you can adjust the pressure settings on the machine as follows:

• IPAP: 14 cmH2O
• EPAP: 7 cmH2O

After making these changes and performing an assessment , you can see that the patient’s condition is improving.

Two days later, the patient has been successfully weaned off the BiPAP machine and no longer needs oxygen support. He is now ready to be discharged.

The doctor wants you to recommend home therapy and treatment modalities that could benefit this patient.

What Home Therapy Would You Recommend?

You can recommend home oxygen therapy if the patient’s PaO2 drops below 55 mmHg or their SpO2 drops below 88% more than twice in a three-week period.

Remember: You must use a conservative approach when administering oxygen to a patient with COPD.

Pharmacology

You may also consider the following pharmacological agents:

• Short-acting bronchodilators (e.g., Albuterol)
• Long-acting bronchodilators (e.g., Formoterol)
• Anticholinergic agents (e.g., Ipratropium bromide)
• Inhaled corticosteroids (e.g., Budesonide)
• Methylxanthine agents (e.g., Theophylline)

In addition, education on smoking cessation is also important for patients who smoke. Nicotine replacement therapy may also be indicated.

In some cases, bronchial hygiene therapy should be recommended to help with secretion clearance (e.g., positive expiratory pressure (PEP) therapy).

It’s also important to instruct the patient to stay active, maintain a healthy diet, avoid infections, and get an annual flu vaccine. Lastly, some COPD patients may benefit from cardiopulmonary rehabilitation .

By taking all of these factors into consideration, you can better manage this patient’s COPD and improve their quality of life.

Final Thoughts

There are two key points to remember when treating a patient with COPD. First, you must always be mindful of the amount of oxygen being delivered to keep the FiO2 as low as possible.

Second, you should use noninvasive ventilation, if possible, before performing intubation and conventional mechanical ventilation . Too much oxygen can knock out the patient’s drive to breathe, and once intubated, these patients can be difficult to wean from the ventilator .

Furthermore, once the patient is ready to be discharged, you must ensure that you are sending them home with the proper medications and home treatments to avoid readmission.

Written by:

John Landry is a registered respiratory therapist from Memphis, TN, and has a bachelor's degree in kinesiology. He enjoys using evidence-based research to help others breathe easier and live a healthier life.

• Faarc, Kacmarek Robert PhD Rrt, et al. Egan’s Fundamentals of Respiratory Care. 12th ed., Mosby, 2020.
• Chang, David. Clinical Application of Mechanical Ventilation . 4th ed., Cengage Learning, 2013.
• Rrt, Cairo J. PhD. Pilbeam’s Mechanical Ventilation: Physiological and Clinical Applications. 7th ed., Mosby, 2019.
• Faarc, Gardenhire Douglas EdD Rrt-Nps. Rau’s Respiratory Care Pharmacology. 10th ed., Mosby, 2019.
• Faarc, Heuer Al PhD Mba Rrt Rpft. Wilkins’ Clinical Assessment in Respiratory Care. 8th ed., Mosby, 2017.
• Rrt, Des Terry Jardins MEd, and Burton George Md Facp Fccp Faarc. Clinical Manifestations and Assessment of Respiratory Disease. 8th ed., Mosby, 2019.

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Living with COPD - My Story

Whether you are a patient, carer, clinician or interested bystander, my hope is that what I share in my story about living with COPD resonates with you in some way.

That was then: My way to diagnosis and beyond

I was born in the 40s and like many of my generation, I was a regular smoker until I quit in when I was in my 50s. By quitting I believed that I had dodged a bullet because for eight years I enjoyed good health. In 2003 I began to experience subtle symptoms, such as shortness of breath, cough and chest congestion and infections, which belied the seriousness of the condition that I now live with. It wasn’t until my mid-fifties that I was told I had chronic obstructive pulmonary disease (COPD) and had lost more than 25 % of my lung capacity. At this point, no mention was made of rehabilitation or structured exercise in addition to medication, but I still felt well. I took the required inhalants and medication as prescribed so I thought I had stopped the disease in its tracks. I also still held a demanding and responsible job, and retirement was a distant vision. So much for blissful ignorance!

In 2011 I was forced to confront reality. My breathing became considerably worse and began to impact my everyday life. Things took longer to do and I worked hard to hide the worst of my symptoms from my greatest supporter and most severe critic, my significant other. Fortunately for me, my wife is far smarter than I am and insisted that I consult another respiratory specialist and plan an exit from work, enabling us to share what I had almost lost sight of, a now uncertain future for us to enjoy. With another breathing test result showing a 50 per cent loss of predicted capacity, I faced reality and my own mortality squarely in the eye for the very first time.

My advice: Knowledge is power, so educate yourself on your condition. And be prepared to question your doctors. It’s not just your right, it is your responsibility.

It was good fortune that the specialist had on his desk a copy of LungNet News, the official newsletter of Lung Foundation Australia . I took the copy and contacted them directly and was referred to the Royal Brisbane Hospital Thoracic Department where I soon after began pulmonary rehabilitation. For those not familiar with these programs, they typically comprise an initial assessment, a review of individual physical capability based on age or disability, followed by an eight week, twice weekly class including tailored gym exercise for an hour which is usually complemented by education sessions covering a variety of topics like lung pathology, medication, diet, breathing techniques and management of anxiety.

Following the pulmonary rehabilitation program, I kept up the routine and since then I religiously attend this class twice weekly. I believe this is one of the most critical factors in maintaining good health for people with COPD. Evidence points to exercise being more beneficial or effective than many prescribed medications. The other very important step during pulmonary rehabilitation is the preparation of a patient driven action plan based on a ‘traffic light’ system. The patient and their doctor establish green, amber, red, symptom levels with corresponding escalating levels of action the patient must take. In doing so the patient is empowered to take ownership of their own condition and immediate responsibility for their health. It’s all about listening to your body and getting to know it well.

Giving back

I decided that now retired, I would become a member of Lung Foundation Australia and perhaps help out to give back. I was asked to help update the national data base for patient support groups. This enabled me to talk directly to other sufferers and carers throughout Australia. I learned a lot about lung disease in general, and came to appreciate the great work the people of this organisation do on behalf of the patients, carers and the community as a whole. I was invited to join the national CPAG (COPD Patient Advocacy Group) to support patients and carers to have a voice within the Foundation on goal setting and priorities.

My personal experience at the Lung Foundation opened my eyes to how much patients ourselves can bring a unique perspective to lung disease awareness, research and self-management by virtue of first-hand experience. My continued philosophy was that if I can assist in preventing any future cases of lung disease or through advocacy improve awareness, diagnosis, management and quality of life for my fellow suffers, then I consider my time well spent.

This is now: Taking part in shaping the future of COPD management

Twelve years post diagnosis and after completing pulmonary rehabilitation and commencing my volunteer work with Lung Foundation Australia, I can look back with some satisfaction at where I am and what I have achieved.

My COPD is stable, despite having suffered a couple of exacerbations over the last couple of years. I repeated pulmonary rehabilitation after my first flare up and continue to learn more about lung disease. I have completed a clinical medication trial and will continue to look for further tests or trials in which I can participate. I have also informally counselled others who approached me to help them better understand their condition and recalled my experiences on a similar journey of discovery.

I participated in the COPD Global Foundation Summit in France, which has the goal of driving worldwide change in the recognition, diagnosis and treatment of COPD. It was an honour to represent Australia at the forum. It was very interesting to see how COPD is managed in different cultures and nations.

My hope is that the COPD Global Foundation and its network of patients, carers and clinicians will develop into a well-respected, accessible resource with a voice that will reach the most remote communities to help, and indeed be the catalyst for change, in improving the lives and conditions of people with COPD, no matter where they are in the world.

My advice: Take Responsibility for Your Health

In retrospect, it would be easy but unfair to single out doctors for their often reactive approach to the management of chronic diseases such as COPD. More often than not, they have an abundance of patients, multiple critical cases and time pressures to deal with. As patients we must learn to help ourselves by demanding the time of our doctors, educating ourselves on diseases prior to consultations and preparing questions. We are generally not keen to hear bad news, the rationale being that if we need to hear more, the doctor will tell us all. If he does not then all is well. There can be fatal flaws in that belief. If we do not show initiative and purpose in our dealings with clinicians, or take responsibility for the management of our own health, we deserve the treatment we get. My advice is simple. Knowledge is power, so educate yourself on your condition. And be prepared to question your doctors: it’s not just your right, it is your responsibility.

Ian Venamore was diagnosed with chronic obstructive pulmonary disease (COPD) in his mid-fifties. Today he is an active volunteer member of Lung Foundation Australia and chair of the associated COPD Patient Advocacy Group (CPAG).He also participates in international meetings with the goal to change the future of COPD recognition, diagnosis and treatment. He is a strong advocate for pulmonary rehabilitation and attends his gym classes “religiously.” He is also a firm believer in and proponent of patient education and self management.

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A COPD Case Study: Jim B.

This post was written by Jane Martin, BA, LRT, CRT, Assistant Director of Education at the COPD Foundation .

We're interested in your thoughts on our latest COPD case study: Jim B., a 68-year-old man here for his Phase II Pulmonary Rehabilitation intake interview.

A bit more about Jim:

Medical history: COPD, FEV1 six weeks ago was 38% of normal predicted, recent CXR shows flattened diaphragm with increased AP diameter, appendectomy age 34, broken nose and broken right arm as a child.

Labs: Lytes plus and CBC all within normal limits.

Physical exam: Breath sounds markedly diminished bilaterally with crackles right lower lobe and wheeze left upper lobe. Visible use of accessory muscles. O2 Saturation 93% room air, 95% O2 on 2lpm. Respiratory rate 24 and shallow, HR 94, BP 150/88, 1+ pitting pedal edema.

Current Medications: Prednisone 10mg q day / DuoNeb q 4 hrs. / Ibuprofen 400mg BID / Tums prn (estimates he takes two per day).

Respiratory history: 80-pack-year cigarette history, quit last year. He has developed a dry, hacking, non-productive cough over the last six months. Had asthma as a child and was exposed to second-hand smoke and cooking fumes while working at family-owned restaurant as a child. Lately, he has noticed slight chest tightness and increased cough when visiting his wife’s art studio.

Family history: Father had emphysema, died at age 69, mother died of breast cancer at 62. Grandfather died at age 57, grandmother died in her 40s of suicide. Six adult children, alive and well.

Previous respiratory admissions: Inpatient admission for six days last winter for acute exacerbation of COPD with bacterial pneumonia requiring 24-hour intubation and mechanical ventilation.

Psych: Jim presents to his Phase II Pulmonary Rehab intake interview appearing disheveled, wearing a sweatshirt, pajama pants and bedroom slippers. He is accompanied by his wife and adult daughter who appear neat, clean and well dressed. Patient states, “I don’t think you people can do anything to help me. I’m only here because they (referring to wife and daughter) made me go.” Jim states that he has been doing less and less at home since discharged from the hospital last winter. Wife states, “He walked outside a little with our grandchildren last Sunday and got so short of breath, he almost collapsed.” Became emotional when saying, “It scared the kids. It tore me up for them to see me that way. Besides that, with this darn shoulder I can’t even pick up the little ones anymore.”

Social: Lives at home with his wife of 43 years who works as an artist. Two out of his six children live within 30 miles of Jim’s home.

Occupation: Building contractor, retired three years ago. Jim states, “I made a good living. All the kids were able to go to college. I was strong. I could work circles around anybody in my crew. And now look at me. I’m tied to that darn breathing machine (referring to nebulizer) and I might as well hang it up.” Wife states, “He used to have all kinds of energy. Now all he does is sit in his chair watching TV, eating potato chips and peanuts.”

Tell us your impressions!

• What co-morbidities should be explored?
• How would you change Jim’s medication regime?
• What psych/social recommendations would you make?
• What other medical disciplines should do a consult on this patient?
• This is a real case. What are your thoughts on what took place following Jim’s pulmonary rehab intake interview?

This page was reviewed on March 3, 2020 by the COPD Foundation Content Review and Evaluation Committee

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‘Much will be said and promised over the next six weeks’

STEVE FORD, EDITOR

• You are here: COPD

Diagnosis and management of COPD: a case study

04 May, 2020

This case study explains the symptoms, causes, pathophysiology, diagnosis and management of chronic obstructive pulmonary disease

This article uses a case study to discuss the symptoms, causes and management of chronic obstructive pulmonary disease, describing the patient’s associated pathophysiology. Diagnosis involves spirometry testing to measure the volume of air that can be exhaled; it is often performed after administering a short-acting beta-agonist. Management of chronic obstructive pulmonary disease involves lifestyle interventions – vaccinations, smoking cessation and pulmonary rehabilitation – pharmacological interventions and self-management.

Citation: Price D, Williams N (2020) Diagnosis and management of COPD: a case study. Nursing Times [online]; 116: 6, 36-38.

Authors: Debbie Price is lead practice nurse, Llandrindod Wells Medical Practice; Nikki Williams is associate professor of respiratory and sleep physiology, Swansea University.

• This article has been double-blind peer reviewed
• Scroll down to read the article or download a print-friendly PDF here (if the PDF fails to fully download please try again using a different browser)

Introduction

The term chronic obstructive pulmonary disease (COPD) is used to describe a number of conditions, including chronic bronchitis and emphysema. Although common, preventable and treatable, COPD was projected to become the third leading cause of death globally by 2020 (Lozano et al, 2012). In the UK in 2012, approximately 30,000 people died of COPD – 5.3% of the total number of deaths. By 2016, information published by the World Health Organization indicated that Lozano et al (2012)’s projection had already come true.

People with COPD experience persistent respiratory symptoms and airflow limitation that can be due to airway or alveolar abnormalities, caused by significant exposure to noxious particles or gases, commonly from tobacco smoking. The projected level of disease burden poses a major public-health challenge and primary care nurses can be pivotal in the early identification, assessment and management of COPD (Hooper et al, 2012).

Grace Parker (the patient’s name has been changed) attends a nurse-led COPD clinic for routine reviews. A widowed, 60-year-old, retired post office clerk, her main complaint is breathlessness after moderate exertion. She scored 3 on the modified Medical Research Council (mMRC) scale (Fletcher et al, 1959), indicating she is unable to walk more than 100 yards without stopping due to breathlessness. Ms Parker also has a cough that produces yellow sputum (particularly in the mornings) and an intermittent wheeze. Her symptoms have worsened over the last six months. She feels anxious leaving the house alone because of her breathlessness and reduced exercise tolerance, and scored 26 on the COPD Assessment Test (CAT, catestonline.org), indicating a high level of impact.

Ms Parker smokes 10 cigarettes a day and has a pack-year score of 29. She has not experienced any haemoptysis (coughing up blood) or chest pain, and her weight is stable; a body mass index of 40kg/m 2 means she is classified as obese. She has had three exacerbations of COPD in the previous 12 months, each managed in the community with antibiotics, steroids and salbutamol.

Ms Parker was diagnosed with COPD five years ago. Using Epstein et al’s (2008) guidelines, a nurse took a history from her, which provided 80% of the information needed for a COPD diagnosis; it was then confirmed following spirometry testing as per National Institute for Health and Care Excellence (2018) guidance.

The nurse used the Calgary-Cambridge consultation model, as it combines the pathological description of COPD with the patient’s subjective experience of the illness (Silverman et al, 2013). Effective communication skills are essential in building a trusting therapeutic relationship, as the quality of the relationship between Ms Parker and the nurse will have a direct impact on the effectiveness of clinical outcomes (Fawcett and Rhynas, 2012).

In a national clinical audit report, Baxter et al (2016) identified inaccurate history taking and inadequately performed spirometry as important factors in the inaccurate diagnosis of COPD on general practice COPD registers; only 52.1% of patients included in the report had received quality-assured spirometry.

Pathophysiology of COPD

Knowing the pathophysiology of COPD allowed the nurse to recognise and understand the physical symptoms and provide effective care (Mitchell, 2015). Continued exposure to tobacco smoke is the likely cause of the damage to Ms Parker’s small airways, causing her cough and increased sputum production. She could also have chronic inflammation, resulting in airway smooth-muscle contraction, sluggish ciliary movement, hypertrophy and hyperplasia of mucus-secreting goblet cells, as well as release of inflammatory mediators (Mitchell, 2015).

Ms Parker may also have emphysema, which leads to damaged parenchyma (alveoli and structures involved in gas exchange) and loss of alveolar attachments (elastic connective fibres). This causes gas trapping, dynamic hyperinflation, decreased expiratory flow rates and airway collapse, particularly during expiration (Kaufman, 2013). Ms Parker also displayed pursed-lip breathing; this is a technique used to lengthen the expiratory time and improve gaseous exchange, and is a sign of dynamic hyperinflation (Douglas et al, 2013).

In a healthy lung, the destruction and repair of alveolar tissue depends on proteases and antiproteases, mainly released by neutrophils and macrophages. Inhaling cigarette smoke disrupts the usually delicately balanced activity of these enzymes, resulting in the parenchymal damage and small airways (with a lumen of <2mm in diameter) airways disease that is characteristic of emphysema. The severity of parenchymal damage or small airways disease varies, with no pattern related to disease progression (Global Initiative for Chronic Obstructive Lung Disease, 2018).

Ms Parker also had a wheeze, heard through a stethoscope as a continuous whistling sound, which arises from turbulent airflow through constricted airway smooth muscle, a process noted by Mitchell (2015). The wheeze, her 29 pack-year score, exertional breathlessness, cough, sputum production and tiredness, and the findings from her physical examination, were consistent with a diagnosis of COPD (GOLD, 2018; NICE, 2018).

Spirometry is a tool used to identify airflow obstruction but does not identify the cause. Commonly measured parameters are:

• Forced expiratory volume – the volume of air that can be exhaled – in one second (FEV1), starting from a maximal inspiration (in litres);
• Forced vital capacity (FVC) – the total volume of air that can be forcibly exhaled – at timed intervals, starting from a maximal inspiration (in litres).

Calculating the FEV1 as a percentage of the FVC gives the forced expiratory ratio (FEV1/FVC). This provides an index of airflow obstruction; the lower the ratio, the greater the degree of obstruction. In the absence of respiratory disease, FEV1 should be ≥70% of FVC. An FEV1/FVC of <70% is commonly used to denote airflow obstruction (Moore, 2012).

As they are time dependent, FEV1 and FEV1/FVC are reduced in diseases that cause airways to narrow and expiration to slow. FVC, however, is not time dependent: with enough expiratory time, a person can usually exhale to their full FVC. Lung function parameters vary depending on age, height, gender and ethnicity, so the degree of FEV1 and FVC impairment is calculated by comparing a person’s recorded values with predicted values. A recorded value of >80% of the predicted value has been considered ‘normal’ for spirometry parameters but the lower limit of normal – equal to the fifth percentile of a healthy, non-smoking population – based on more robust statistical models is increasingly being used (Cooper et al, 2017).

A reversibility test involves performing spirometry before and after administering a short-acting beta-agonist (SABA) such as salbutamol; the test is used to distinguish between reversible and fixed airflow obstruction. For symptomatic asthma, airflow obstruction due to airway smooth-muscle contraction is reversible: administering a SABA results in smooth-muscle relaxation and improved airflow (Lumb, 2016). However, COPD is associated with fixed airflow obstruction, resulting from neutrophil-driven inflammatory changes, excess mucus secretion and disrupted alveolar attachments, as opposed to airway smooth-muscle contraction.

Administering a SABA for COPD does not usually produce bronchodilation to the extent seen in someone with asthma: a person with asthma may demonstrate significant improvement in FEV1 (of >400ml) after having a SABA, but this may not change in someone with COPD (NICE, 2018). However, a negative response does not rule out therapeutic benefit from long-term SABA use (Marín et al, 2014).

NICE (2018) and GOLD (2018) guidelines advocate performing spirometry after administering a bronchodilator to diagnose COPD. Both suggest a FEV1/FVC of <70% in a person with respiratory symptoms supports a diagnosis of COPD, and both grade the severity of the condition using the predicted FEV1. Ms Parker’s spirometry results showed an FEV1/FVC of 56% and a predicted FEV1 of 57%, with no significant improvement in these values with a reversibility test.

GOLD (2018) guidance is widely accepted and used internationally. However, it was developed by medical practitioners with a medicalised approach, so there is potential for a bias towards pharmacological management of COPD. NICE (2018) guidance may be more useful for practice nurses, as it was developed by a multidisciplinary team using evidence from systematic reviews or meta-analyses of randomised controlled trials, providing a holistic approach. NICE guidance may be outdated on publication, but regular reviews are performed and published online.

NHS England (2016) holds a national register of all health professionals certified in spirometry. It was set up to raise spirometry standards across the country.

Assessment and management

The goals of assessing and managing Ms Parker’s COPD are to:

• Review and determine the level of airflow obstruction;
• Assess the disease’s impact on her life;
• Risk assess future disease progression and exacerbations;
• Recommend pharmacological and therapeutic management.

GOLD’s (2018) ABCD assessment tool (Fig 1) grades COPD severity using spirometry results, number of exacerbations, CAT score and mMRC score, and can be used to support evidence-based pharmacological management of COPD.

When Ms Parker was diagnosed, her predicted FEV1 of 57% categorised her as GOLD grade 2, and her mMRC score, CAT score and exacerbation history placed her in group D. The mMRC scale only measures breathlessness, but the CAT also assesses the impact COPD has on her life, meaning consecutive CAT scores can be compared, providing valuable information for follow-up and management (Zhao, et al, 2014).

After assessing the level of disease burden,  Ms Parker was then provided with education for self-management and lifestyle interventions.

Lifestyle interventions

Smoking cessation.

Cessation of smoking alongside support and pharmacotherapy is the second-most cost-effective intervention for COPD, when compared with most other pharmacological interventions (BTS and PCRS UK, 2012). Smoking cessation:

• Slows the progression of COPD;
• Improves lung function;
• Improves survival rates;
• Reduces the risk of lung cancer;
• Reduces the risk of coronary heart disease risk (Qureshi et al, 2014).

Ms Parker accepted a referral to an All Wales Smoking Cessation Service adviser based at her GP surgery. The adviser used the internationally accepted ‘five As’ approach:

• Ask – record the number of cigarettes the individual smokes per day or week, and the year they started smoking;
• Advise – urge them to quit. Advice should be clear and personalised;
• Assess – determine their willingness and confidence to attempt to quit. Note the state of change;
• Assist – help them to quit. Provide behavioural support and recommend or prescribe pharmacological aids. If they are not ready to quit, promote motivation for a future attempt;
• Arrange – book a follow-up appointment within one week or, if appropriate, refer them to a specialist cessation service for intensive support. Document the intervention.

NICE (2013) guidance recommends that this be used at every opportunity. Stead et al (2016) suggested that a combination of counselling and pharmacotherapy have proven to be the most effective strategy.

Pulmonary rehabilitation

Ms Parker’s positive response to smoking cessation provided an ideal opportunity to offer her pulmonary rehabilitation (PR)  – as indicated by Johnson et al (2014), changing one behaviour significantly increases a person’s chance of changing another.

PR – a supervised programme including exercise training, health education and breathing techniques – is an evidence-based, comprehensive, multidisciplinary intervention that:

• Improves exercise tolerance;
• Reduces dyspnoea;
• Promotes weight loss (Bolton et al, 2013).

These improvements often lead to an improved quality of life (Sciriha et al, 2015).

Most relevant for Ms Parker, PR has been shown to reduce anxiety and depression, which are linked to an increased risk of exacerbations and poorer health status (Miller and Davenport, 2015). People most at risk of future exacerbations are those who already experience them (Agusti et al, 2010), as in Ms Parker’s case. Patients who have frequent exacerbations have a lower quality of life, quicker progression of disease, reduced mobility and more-rapid decline in lung function than those who do not (Donaldson et al, 2002).

“COPD is a major public-health challenge; nurses can be pivotal in early identification, assessment and management”

Pharmacological interventions

Ms Parker has been prescribed inhaled salbutamol as required; this is a SABA that mediates the increase of cyclic adenosine monophosphate in airway smooth-muscle cells, leading to muscle relaxation and bronchodilation. SABAs facilitate lung emptying by dilatating the small airways, reversing dynamic hyperinflation of the lungs (Thomas et al, 2013). Ms Parker also uses a long-acting muscarinic antagonist (LAMA) inhaler, which works by blocking the bronchoconstrictor effects of acetylcholine on M3 muscarinic receptors in airway smooth muscle; release of acetylcholine by the parasympathetic nerves in the airways results in increased airway tone with reduced diameter.

At a routine review, Ms Parker admitted to only using the SABA and LAMA inhalers, despite also being prescribed a combined inhaled corticosteroid and long-acting beta 2 -agonist (ICS/LABA) inhaler. She was unaware that ICS/LABA inhalers are preferred over SABA inhalers, as they:

• Last for 12 hours;
• Improve the symptoms of breathlessness;
• Increase exercise tolerance;
• Can reduce the frequency of exacerbations (Agusti et al, 2010).

However, moderate-quality evidence shows that ICS/LABA combinations, particularly fluticasone, cause an increased risk of pneumonia (Suissa et al, 2013; Nannini et al, 2007). Inhaler choice should, therefore, be individualised, based on symptoms, delivery technique, patient education and compliance.

It is essential to teach and assess inhaler technique at every review (NICE, 2011). Ms Parker uses both a metered-dose inhaler and a dry-powder inhaler; an in-check device is used to assess her inspiratory effort, as different inhaler types require different inhalation speeds. Braido et al (2016) estimated that 50% of patients have poor inhaler technique, which may be due to health professionals lacking the confidence and capability to teach and assess their use.

Patients may also not have the dexterity, capacity to learn or vision required to use the inhaler. Online resources are available from, for example, RightBreathe (rightbreathe.com), British Lung Foundation (blf.org.uk). Ms Parker’s adherence could be improved through once-daily inhalers, as indicated by results from a study by Lipson et al (2017). Any change in her inhaler would be monitored as per local policy.

Vaccinations

Ms Parker keeps up to date with her seasonal influenza and pneumococcus vaccinations. This is in line with the low-cost, highest-benefit strategy identified by the British Thoracic Society and Primary Care Respiratory Society UK’s (2012) study, which was conducted to inform interventions for patients with COPD and their relative quality-adjusted life years. Influenza vaccinations have been shown to decrease the risk of lower respiratory tract infections and concurrent COPD exacerbations (Walters et al, 2017; Department of Health, 2011; Poole et al, 2006).

Self-management

Ms Parker was given a self-management plan that included:

• Information on how to monitor her symptoms;
• A rescue pack of antibiotics, steroids and salbutamol;
• A traffic-light system demonstrating when, and how, to commence treatment or seek medical help.

Self-management plans and rescue packs have been shown to reduce symptoms of an exacerbation (Baxter et al, 2016), allowing patients to be cared for in the community rather than in a hospital setting and increasing patient satisfaction (Fletcher and Dahl, 2013).

Improving Ms Parker’s adherence to once-daily inhalers and supporting her to self-manage and make the necessary lifestyle changes, should improve her symptoms and result in fewer exacerbations.

The earlier a diagnosis of COPD is made, the greater the chances of reducing lung damage through interventions such as smoking cessation, lifestyle modifications and treatment, if required (Price et al, 2011).

• Chronic obstructive pulmonary disease is a progressive respiratory condition, projected to become the third leading cause of death globally
• Diagnosis involves taking a patient history and performing spirometry testing
• Spirometry identifies airflow obstruction by measuring the volume of air that can be exhaled
• Chronic obstructive pulmonary disease is managed with lifestyle and pharmacological interventions, as well as self-management

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• Open access
• Published: 13 December 2023

The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD

• Nicola Scichilone 1 ,
• Andrew Whittamore 2 ,
• Chris White 3 ,
• Elena Nudo 4 ,
• Massimo Savella 4 &
• Marta Lombardini 4  

BMC Pulmonary Medicine volume  23 , Article number:  506 ( 2023 ) Cite this article

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Chronic obstructive pulmonary disease (COPD) is a common condition that causes irreversible airway obstruction. Fatigue and exertional dyspnoea, for example, have a detrimental impact on the patient’s daily life. Current research has revealed the need to empower the patient, which can result in not only educated and effective decision-making, but also a considerable improvement in patient satisfaction and treatment compliance.

The current study aimed to investigate the perspectives and requirements of people living with COPD to possibly explore new ways to manage their disease.

Adults with COPD from 8 European countries were interviewed by human factor experts to evaluate their disease journey through the gathering of information on the age, performance, length, and impact of diagnosis, symptoms progression, and family and friends' reactions. The assessment of present symptoms, services, and challenges was performed through a 90-min semi-structured interview. To identify possible unmet needs of participants, a generic thematic method was used to explore patterns, themes, linkages, and sequences within the data collected. Flow charts and diagrams were created to communicate the primary findings. Following analysis, the data was consolidated into cohesive insights and conversation themes relevant to determining the patient's unmet needs.

The 62, who voluntarily accepted to be interviewed, were patients (61% females, aged 32–70 years) with a COPD diagnosis for at least 6 months with stable symptoms of different severity. The main challenges expressed by the patients were the impact on their lifestyle, reduced physical activity, and issues with their mobility. About one-fourth had challenges with their symptoms or medication including difficulty in breathing. Beyond finding a cure for COPD was the primary goal for patients, their main needs were to receive adequate information on the disease and treatments, and to have adequate support to improve physical activity and mobility, helpful both for patients and their families.

Conclusions

These results could aid in the creation of new ideas and concepts to improve our patient’s quality of life, encouraging a holistic approach to people living with COPD and reinforcing the commitment to understanding their needs.

Peer Review reports

Introduction

Chronic obstructive pulmonary disease (COPD) is defined by irreversible airway obstruction linked with comorbidities or systemic effects  [ 1 ]. COPD is a worldwide epidemic that contributes significantly to healthcare expenses due to high morbidity and mortality rates [ 2 , 3 ]. The clinical assessment of fixed airflow limitation and symptoms such as coughing and wheezing determine a COPD diagnosis; nevertheless, COPD symptoms negatively impact the patient's daily activities and lifestyle [ 4 ]. Patients may encounter a variety of debilitating physical symptoms, resulting in functional loss and high degrees of psychosocial anguish [ 5 , 6 , 7 ].

Integrated approaches to disease assessment and management are required to better understand and address the burden of COPD symptoms from a patient's perspective [ 8 ].

According to a recent observational study, regardless of disease severity, more than half of COPD patients experienced symptoms during the whole 24-h day, and almost 80% of patients reported experiencing symptoms at least twice a day. Symptoms are linked to poor health, depression, anxiety, and poor sleep quality [ 9 , 10 ].

Patients with COPD and comorbidities remain particularly challenging to manage because in Europe there is, generally, no guidance at the national level except in the UK, Slovenia, and Germany [ 11 , 12 , 13 ]. In Nordic countries and France, the management of patients with COPD is mainly performed by general practitioners with an inadequate level of assistance [ 14 , 15 , 16 ]. In other countries, patient management is performed at the discretion of the local structures, and the need for a comprehensive, holistic approach is looked forward [ 17 , 18 , 19 , 20 ]. Other chronic conditions increase symptom load, impair functional performance, and negatively impact health status; thus, management strategies must be adjusted accordingly [ 10 ].

Care plans, within the healthcare system, emphasize the importance of addressing these patients' particular physical, psychological, social, and spiritual needs through holistic supportive input offered as person-centered care [ 21 ]. Understanding the patient's perspective on their support requirements (those areas of living with COPD for which they require assistance, such as help controlling symptoms or accessing financial benefits) is critical to facilitating this approach. A recent systematic literature review has identified a whole range of support needs for COPD patients, based on the perspectives of the patients themselves [ 7 ].

Our human factor study aims to explore how COPD has affected the patients’ daily lives and the lives of those around them, through the assessment of symptoms, treatment, and service availability, identifying what challenges the patient faces in living with COPD, and which are the unmet needs in the different stages of the journey of care.

This human factors COPD patient needs study was conducted in November 2022 by an ISO 13485 certified specialist human factors consultant (Rebus Medical Ltd), both in-person or remotely, via video call using the Zoom platform. Remote interviews were needed to enable more severe patients to attend the sessions and to ensure that the intended study sample was achieved. As for other qualitative analyses, a minimum of 48 participants were planned to be interviewed.

Interviews were conducted on a 1–1 basis, with patients who voluntarily accepted to be interviewed from 8 countries: Denmark, France, Germany, Italy, Slovenia, Spain, Sweden, and the UK. Each interview was 90 min long and followed a semi-structured approach allowing for unscripted discussion when the participants’ responses raised new questions. For interviews that took place outside of the UK, a native-speaking moderator conducted the interview, whilst an interpreter translated the conversation live to a data analyst (Fig.  1 ).

Summary of the study methods. Countries involved in the study are indicated in grey

Participants included in the study, aged 18 years or older, with a current COPD diagnosis, were screened for COPD severity according to GOLD criteria-2020-document [ 22 ] and voluntarily provided their informed consent.

Because the objectives were connected to identifying unmet requirements through video conference, the formative interviews were deemed low to minimal risk to participants and, thus, no formal approval to an Ethical Committee was required.

For interviews conducted in a language other than English, a simultaneous translator was recruited to enable a member of Rebus Medical staff to watch the interview listen to the translation, and record notes. Digital video recordings were collected to accurately account for each test session. Notes were verified at the end of each interview, while participant faces recorded on the videos were blurred to anonymize the footage. When all interviews were complete, the raw notes from each interview were collated and verified using the recorded videos in a master data capture spreadsheet.

The interviews were conducted to evaluate the journey of care through the collection of information on the gender, age, performance, length, and impact of diagnosis, symptoms progression, and family and friends’ reactions through questions that were designed on purpose to identify the unmet need and main challenges of each step of the patient’s journey. The evaluation of the current symptoms (fluctuations, flare-ups, alleviations, effect on sleep and daily activities including the use of electronic devices), services (health care providers support, insurance, available information on COPD), and challenges (in lifestyle, daily activities, treatments, symptoms management, emotional and environmental) was included in the semi-structured interview (Table 1 ).

As this was an exploratory insight interview, protocol deviations like alterations to the interviewer’s script to reformulate questions, ad hoc addition of questions and probes to the interviewer’s script to focus on points of interest specific to each participant, and changes to the interviewer’s script as the study progresses to allow for study learnings were permitted and expected.

A generic thematic approach was employed to uncover patterns, themes, links, and sequences within the data collected to identify probable unmet needs of participants through the patient journey of people living with COPD.

To communicate the major findings, flow charts, and diagrams were constructed. Following analysis, the data were synthesized and refined into cohesive insights and discussion themes pertinent to identifying the patient's unmet needs along the different stages of the patient journey.

A total of 62 patients (38—61% females) with COPD aged between 32 and 70 years ( N  = 1 aged 25–40 years, N  = 42 aged 41–65 years, N  = 19 aged > 65 years) were interviewed. Most of the patients (35—56%) had severe COPD (Table 2 ).

Current- or past smokers were 49 (80%) of the 61 respondents. A larger proportion of patients with severe COPD (9/35, 26%) had never smoked compared to the moderate COPD patient group (3/27, 11%); in fact, 26 (74%) severe patients and 24 (89%) moderate were smokers or had smoked in the past (Fig.  2 ).

Distribution of patients that have ever been a smoker against COPD severity

Legend: n/a = not available

Patient journey

A total of 113 symptoms of COPD were recorded because most patients reported more than 1 symptom at the onset of the disease; 78 (69%) of these symptoms were related to dyspnoea. The highest reported symptoms were difficulty breathing and coughing (Fig.  3 ).

Patient’s reported signs and symptoms leading to COPD diagnosis

Note—Other includes chest tightness, hereditary respiratory issues, persistent flare ups, unable to walk upstairs, difficulty talking, difficulty walking, difficulty swallowing, bronchitis as a child and headaches

Fourteen (30%) of the 46 respondents referred to being diagnosed with COPD more than 1 year after initial symptoms, while 6 (13%) were diagnosed from 7 to 12 months from the onset of symptoms. Ten (64%) of the 14 requiring > 1 year for their diagnosis had severe COPD.

Most of the 56 patients who answered (41 – 73%) were diagnosed by a lung specialist mainly using spirometry (Fig.  4 ).

Tests performed at the visit of diagnosis

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom. “Other” includes: MRI, pressure cabin test, swabs collected, endoscope to check lungs, chamber, PET scan, Blood taken from the ear, blood gas test, oxygen saturation, walking/ running tests, echocardiogram, pulse oximeter/O 2 saturation, sleep test

About half of the responders (23 of 45 – 51%) felt their symptoms stable from the diagnosis (Fig.  5 ).

Symptom progression

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom, n/a = not available

Thirteen (29%) of those interviewed stated that their family and friends were supportive at the time of COPD diagnosis while 8 (18%) were worried about the diagnosis. Seven of them received no reaction from their family or friends and a further 7 did not tell anyone about their diagnosis. ‘Other’ reactions that were received from family and friends included: acceptance, anger, fear, shock, anguish, and expected, while some patients “prefer not to speak about it”.

The COPD diagnosis hurt 26 (58%) of the responders who described a negative impact of their COPD diagnosis, mainly because of their inability to be active, while 13 of them (29%) felt a positive impact mainly because they stopped or reduced smoking (Table 3 ).

Six (19%) of the 31 patients who provided details on the reason for quitting smoking reported they received more information about how to give up smoking and the risks associated with smoking, 3 patients mentioned some form of medication to support smoking cessation may have helped them give up, and 2 patients reported that they would give up for a family member but would struggle to have the motivation to do it themselves. Three patients reported that nothing would have helped them stop smoking while 8 patients reported that, despite knowing the impact smoking has, they still chose to smoke. Other suggestions to stop smoking reported by participants included: the threat of death, vaping if the smoking affected their fitness, cigarettes stopped being sold, stopping because of asthma and its diagnosis, quitting when they were in the hospital for a week giving it up after then, or because the smell was horrible.

A total of 59 patients answered about their changes in symptoms throughout the day; seventeen (29%) felt no changes while 13 (22%) worsened in the morning, 11 (19%) worsened at night, and 6 (10%) worsened both in the morning and at night.

Twenty-five (41%) of the 61 responders were hospitalized due to a COPD flare-up at least once after their COPD diagnosis; most of them had severe disease (Fig.  6 ).

Number of patients that have experienced a COPD flare-up by COPD severity

Seven (30%) of the 23 patients who took any action to alleviate their symptoms, before seeing a doctor and getting a diagnosis, reduced their physical exercise to not trigger symptoms. While others were more vigilant with their health, received help from family and friends, or used inhalers, a rescue pack, or menthol sweets.

Thirty seven out of 58 participants reported sleep disruption. Of these, 12 (32%), reported disruption due to COPD while 10 (17%) had sleep negatively affected by another condition. Other causes for patients’ sleep disruption included coughing, the need to change sleeping positions, and cold weather.

Patients reported needing more support including more information about their condition, financial support for transportation, improved treatment options, accessibility badges, and help in carrying out chores in the house such as cooking, cleaning, and general housekeeping. Some patients also indicated a wish for personal training. Some patients were unaware of what type of support they may require or what type of support could be available to them while others were looking for a different inhaler or treatment to alleviate their cough or a device that assists deep breathing, transplant, a dog or a sport requiring a limited physical effort that would help them be more active, and/or meeting a COPD support group.

About half of the respondents (26/56 – 46%) used electronic devices to monitor their health status including a finger pulse oximeter ( n  = 9), smartwatch ( n  = 8), or a blood pressure cuff ( n  = 5).

A total of 64 responses were collected from the 58 patients who shared their opinion on the treatment they were utilizing; 33 (52%) of the feedback was positive (Table 4 ).

While 20 (31%) of the respondents felt neutral about their current prescribed treatment, 11 (17%) reported either that their medicine had "no therapeutic impact", that they faced "psychological restraint" with their prescribed regime, or that they had issues with treatment compliance.

Six (12%) of the 52 respondents confirmed using digital or analogic reminders to take their dose. Three patients were currently using a dose counter on their device to remind them if their doses had not been taken, and two patients were using a timer on their mobile phones to remind them when their next dose was due. One participant used digital/analogic support but did not indicate which.

The main strategies used to remind them to take their medication include:

leaving the medication in a specific location to prompt them to take their dose at the correct time,

relying on habit or routine to prompt them to take their medication,

taking the COPD medication at the same time as other medications,

feeling unwell to prompt themselves to take their medication.

A total of 32 (56%) of the 57 respondents reported missing a medicine dose; eight of them cited a change in their schedule or routine as its cause. Other reasons for missing a dose reported by patients included: not taking the medication seriously, forgetting to take their dose in the evening, forgetting to bring their medication with them when leaving the house, a change in their environment, a missed medication delivery, and “not taking regular doses”.

The primary reasons why patients appreciate their present treatments were the drug's functionality ( n  = 18), the device design ( n  = 10), the convenience of use ( n  = 8), and the medication's quick and uncomplicated administration ( n  = 5). Other patients expressed liking for current medication including feeling comfortable with their present treatment, feeling in charge, and independence.

On the other hand, the device design ( n  = 14), the necessity to take their medication ( n  = 8), and the side effects of the drug ( n  = 5) were the most reported characteristics that patients disliked therapy. Other reported reasons included uncertainty about what the treatment is supposed to do, a sense of guilt when their medication is forgotten, the fact that they are still limited in their activity, and the sensation or taste inside their mouth. Three patients stated that they did not enjoy their current prescribed treatment. "You have to accept what is available," one patient said. Other patients referred detest having to take their medications daily.

About two-thirds ( n  = 34 – 67%) of those polled ( n  = 51) claimed no involvement with the selection of their present treatment option.

Most of the patients ( n  = 42 – 69% of the 61 respondents) reported receiving training for the use of their current treatment. The remaining 31% of the patients did not receive any training, reporting that they “would have liked more formal training, the current device is more complex”, or believed it “could have been useful to receive training and would have loved the explanation, demo training”. Three patients also stated that they did not need training, whether they received it or not.

Twenty-two (52%) of the 42 patients that received training, thought that it was effective and only 5 (12%) did not believe their training to be effective. Fifteen (36%) of patients who received training did not provide feedback on the efficacy of the training they received.

Eight Italian patients reported receiving instruction mostly from a lung specialist, while the majority of British ( n  = 5) and Nordic ( n  = 4) patients reported receiving training primarily from a nurse (Fig.  7 ); this is probably due to the different structures of the national health systems.

Health care provider (HCP) that administered training to patients by country

Legend: FR = France, GE = Germany, GP = General Practitioner; IT = Italy, SL = Slovenia, SP = Spain, n/a = not applicable; NO = Northern (Sweden Denmark), UK = United Kingdom

One Italian patient stated he received no specific training but was told by his pneumologist to look inside the package and read the instructions; a Frenchman mentioned that his wife was a doctor, so she just showed him how to use the device. Other participants’ training was received at meetings of a lung association from the pharmacists or at a live course organized by the doctor or during rehabilitation.

Six (18% of the 34 respondents) received help from their family or friends to find training materials or treatment information. Most patients received help to find further information and one participant mentioned that he was able to speak to a relative with COPD.

Six (15%) of the 41 respondents had gone online for help with their equipment (looking for tutorials online on forums and finding animated videos on how to use their inhalers). The main reasons for not using the internet for support were a lack of trust in online information ("would rather trust a doctor than go online"), an unwillingness to read more about their condition due to a fear of "reading too much" and becoming "depressed" if they investigated their disease. Other patients did not feel the need for additional support from the internet because their devices were "easy to use" or they wouldn't need further support due to their disease. One patient stated that he looked online and "found it strange that the messages were exclusively for persons with moderate to severe COPD, with only a few messages from people with mild COPD".

Lung specialists were the health care providers (HCPs) who most frequently provided support to patients with COPD ( n  = 24/60—40%) followed by general practitioners (23 – 38%) (Fig.  8 ); only 3 patients reported not having received any support.

Type of HCP support by country

Legend: FR = France, GE = Germany, IT = Italy, SL = Slovenia, SP = Spain, NO = Northern (Sweden Denmark), UK = United Kingdom

The most frequent answers to the question “If you had a magic wand what would you wish for to improve your life with COPD?” were to find a cure ( n  = 18), followed by more regular visits from their doctor/specialist ( n  = 11), stop smoking ( n  = 5), more information ( n  = 4), HCP contact number and COPD support group ( n  = 3), and digital monitoring ( n  = 2) (Fig.  9 ).

Improvements that patients wish to be made to improve their life by country

Other improvements that patients wish for include: access to new drugs, information about COPD, current and new drugs, reduced side effects, holding COPD workshops, investment in more research, provide cheaper treatment options, new lungs, something to help be more active, to be told that they would not need to take medication anymore, a new type of drug delivery that wouldn’t need to be taken with patient everywhere (like a nicotine patch), instant relief and doctors and nurses to be more humane.

Other services they felt were useful for them included physiotherapy ( n  = 12), the use of support groups ( n  = 8), exercise classes and psychological assistance ( n  = 6), nutrition ( n  = 4) while 1 patient from the UK suggested lifestyle (Fig.  10 ).

Other services the patient would like to use by country

Other services that patients would like to use included easier access to their HCP, paid, private physiotherapy sessions, smoking cessation support, disability card, training (videos and tutorials) including emergencies, lung transplants, more information about new drugs and the benefits of medication, hear more from doctors and pharmacists, and workshops for families and friends to help them understand what patients are going through.

Even if 3 patients reported having insurance covering additional services, they were generally unaware of the support they could receive through medical insurance. Many had concerns that such services would cost more money.

All the patients included in the study provided a total of 122 daily challenges they must face. 53 (43%) of the responses were related to their lifestyle. Reduced physical activity was referred by more than half ( n  = 32) of them and difficulty in mobility was reported by 16; 28 (23%) reported challenges with their symptoms or medication (mainly difficult breathing, n  = 15) (Fig.  11 ) while 13 (11%) reported emotional challenges including anxiety, depression, embarrassment due to symptoms or treatment, fear of the conditioning worsening, people recognizing they have a condition, acceptance of the condition and dependence on the medication.

Most reported challenges by COPD severity

The objective of this human factors research was to identify the unmet needs along the different stages of people living with COPD through a one-to-one, semi-structured interview exploring the patient’s feelings and attitudes toward their journeys with the disease.

Differently from other studies exploring similar aspects of the impact of the disease on patient’s daily life where the data belong to medical databases, [ 4 , 6 , 7 , 9 , 10 , 23 ] the current approach is unique, in that it systematically investigates the patient’s feelings in a structured fashion, thus allowing us to better understand the patient’s emotions, which is becoming a relevant aspect of COPD management [ 7 , 24 ]. Furthermore, because of the consistent and wide heterogeneity between the different countries, patients included in this study could have been considered representative of the entire population of European patients with COPD.

The patient reported feelings highlighted that reduced physical activity, mobility challenges, and difficulty breathing resulted as the main challenges in daily life. According to the current international guidelines on COPD management, [ 22 , 25 , 26 ] physical activity is encouraged and monitored to evaluate the prognosis or looked forward to as a target for the evaluation of the treatment efficacy. [ 25 ] Our results confirm that patients perceive COPD as the cause of their reduced physical activity, [ 27 ] having a strong impact on their self-perception. Differently from other studies where increased physical activity was observed independently from patients’ counseling, [ 28 ] general psychological support and accepting their mobility challenges were described as important aims by the patients. Our patients felt reduced mobility as one of their main challenges; aids to improve mobility were described in the available literature as crucial to maintaining the patient’s independence [ 7 ] and have been included in the 2023 GOLD guidelines [ 29 ].

The HCP approach is mainly focused on improving the patient’s breathlessness and exercise intolerance [ 22 , 25 ]; the feeling depicted by the interviewed patients confirms the lack of information about how to manage breathlessness. [ 30 ] The only positive aspect of the COPD diagnosis, reported by 6 of the interviewees, was smoke quitting. Patients frequently feel angry and depressed when they think about the difficulties they have described. Participants discussed a variety of coping mechanisms to deal with these difficulties, including cutting back on physical activity, making sure they stayed active (as much as possible), and utilizing their rescue inhaler as a preventative step.

About one-fourth of the patients did not report having performed spirometry at diagnosis; as spirometry is the landmark of diagnosis; any other method is not gold standard and subjected to criticism [ 22 ]. Because of the qualitative nature of this study, we cannot exclude that this issue was linked to the patient’s reduced memory at the time of diagnosis.

As observed in other studies, [ 31 ] negative behavior has a strong influence on the patient’s quality of life. Patients in the current study generally felt negative emotions before receiving their diagnosis; however, a supportive role of relatives and caregivers was referred by interviewed subjects at the time of diagnosis. About forty percent of patients complained of having waited long before the diagnosis. When asked about the impact of their current treatment, participants gave primarily positive feedback and commonly described their current therapy as “good” and doing its job. Even if most of the patients included in our study felt stable symptoms, some were still looking for a “miraculous” cure. The need for support beyond just pharmacological treatments, such as psychological support and physiotherapy, became clear through the in-depth discussions with patients, confirming the requirement for an integrated and patient-tailored interview to identify the profile of each patient [ 27 , 32 ] to share the most appropriate interventions in the periodic visits, without the need of the patient’s hospitalizations to allow the introduction of new therapies suggested by other research [ 33 ].

As expected, our results show that the information about COPD and the training on both the disease and treatment were provided by different HCPs in various European countries. However, patients often felt that they were not provided with enough information at the point of diagnosis regarding the condition itself or the range of treatment options available. Some felt they did not receive adequate training on how to take their medication correctly, whereas others highlighted that the public should be made more aware of the condition, in general, to help them feel accepted and understood by their family and friends. When asked about the current support they were receiving for their disease, patients reported wanting more information about their clinical condition or treatment options, more regular visits with their HCP, smoking cessation assistance, and support in their day-to-day lives such as housework and improved accessibility, confirming the need of self-management education and skills training highlighted by other authors [ 22 , 25 , 26 ]. However, many patients were unsure or unaware of what support/services were available to them or did not feel they needed any additional support.

This study had a qualitative approach and was, thus, not designed to provide any definitive answer to a study hypothesis. Differently from other studies on general populations of patients with COPD where males and elderly are the most frequent patients [ 34 , 35 ], those who agreed to participate in this study were mostly women and aged between 42 and 65 years. Due to the inclusion of patients that could not be fully representative of the global patients with COPD and the study approach, the outcomes have to be properly generalized. Furthermore, the nature of the study required interviews to be carried out in the participant’s local language with the use of translators to support analysis leading to a potential loss of nuance in meaning.

In conclusion, the current findings show that an apparent discrepancy exists between the traditional lung functional and pharmacological approaches in diagnosing and managing COPD and patient’s needs and challenges in daily activities. In this respect, human factor studies play a relevant role in intercepting gaps in the care of people suffering from COPD, encouraging a novel holistic approach when designing clinical research or shepherding patients along their COPD daily journey.

Availability of data and materials

The data that support the findings of this study are available from Chris White (Rebus Medical), but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are not available without permission of Chiesi Farmaceutici.

Decramer M, Janssens W, Miravitlles M. Chronic obstructive pulmonary disease. Lancet. 2012 [cited 2023 May 29];379(9823):1341–51. Available from: https://pubmed.ncbi.nlm.nih.gov/22314182/ .

Roggeri A, Micheletto C, Roggeri DP. Outcomes and costs of treating chronic obstructive pulmonary disease with inhaled fixed combinations: the Italian perspective of the PATHOS study. Int J Chron Obstruct Pulmon Dis. 2014 Jun 5 [cited 2023 May 29];9:569–76. Available from: https://pubmed.ncbi.nlm.nih.gov/24940053/ .

Blasi F, Cesana G, Conti S, Chiodini V, Aliberti S, Fornari C, et al. The clinical and economic impact of exacerbations of chronic obstructive pulmonary disease: a cohort of hospitalized patients. PLoS One. 2014 Jun 27 [cited 2023 May 29];9(6). Available from: https://pubmed.ncbi.nlm.nih.gov/24971791/ .

Rennard S, Decramer M, Calverley PMA, Pride NB, Soriano JB, Vermeire PA, et al. Impact of COPD in North America and Europe in 2000: subjects’ perspective of Confronting COPD International Survey. Eur Respir J. 2002 Oct 1 [cited 2023 May 29];20(4):799–805. Available from: https://pubmed.ncbi.nlm.nih.gov/12412667/ .

Sundh J, Ekström M. Persistent disabling breathlessness in chronic obstructive pulmonary disease. Int J Chron Obstruct Pulmon Dis. 2016 Nov 9 [cited 2023 May 29];11(1):2805–12. Available from: https://pubmed.ncbi.nlm.nih.gov/27877034/ .

Ouellette DR, Lavoie K. Recognition, diagnosis, and treatment of cognitive and psychiatric disorders in patients with COPD. Int J Chron Obstruct Pulmon Dis. 2017 Feb [cited 2023 May 29];12:639–50. Available from: https://pubmed.ncbi.nlm.nih.gov/28243081/ .

Gardener AC, Ewing G, Kuhn I, Farquhar M. Support needs of patients with COPD: a systematic literature search and narrative review. Int J Chron Obstruct Pulmon Dis. 2018 Mar 26 [cited 2023 May 29];13:1021–35. Available from: https://pubmed.ncbi.nlm.nih.gov/29628760/ .

Spruit MA, Singh SJ, Garvey C, Zu Wallack R, Nici L, Rochester C, et al. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med. 2013 Oct 15 [cited 2023 May 29];188(8). Available from: https://pubmed.ncbi.nlm.nih.gov/24127811/ .

Miravitlles M, Worth H, Soler Cataluña JJ, Price D, De Benedetto F, Roche N, et al. Observational study to characterise 24-hour COPD symptoms and their relationship with patient-reported outcomes: results from the ASSESS study. Respir Res. 2014 Oct 21 [cited 2023 May 29];15(1). Available from: https://pubmed.ncbi.nlm.nih.gov/25331383/ .

Jones PW, Watz H, Wouters FM, Cazzola M, COPD: the patient perspective. cited 2023 May 29. Available from: 2016. https://doi.org/10.2147/COPD.S85977 .

Article   PubMed Central   Google Scholar  

Škrgat S, Triller N, Košnik M, Susič TP, Petek D, Jamšek VV, et al. Priporočila za obravnavo bolnika s kronično obstruktivno pljučno boleznijo na primarni in specialistični pulmološki ravni v Sloveniji. Zdravniski Vestnik. 2017;86(1–2):1–12.

Google Scholar  

Mehring M, Donnachie E, Fexer J, Hofmann F, Schneider A. Disease management programs for patients with COPD in Germany: a longitudinal evaluation of routinely collected patient records. Respir Care. 2014 [cited 2023 Nov 15];59(7):1123–32. Available from: https://pubmed.ncbi.nlm.nih.gov/24222706/ .

Overview | Chronic obstructive pulmonary disease in over 16s: diagnosis and management | Guidance | NICE. [cited 2023 Nov 15]. Available from: https://www.nice.org.uk/guidance/ng115 .

Molin KR, Søndergaard J, Lange P, Egerod I, Langberg H, Lykkegaard J. Danish general practitioners’ management of patients with COPD: a nationwide survey. Scand J Prim Health Care. 2020 [cited 2023 Nov 15];38(4):391–8. Available from: https://pubmed.ncbi.nlm.nih.gov/33164618/ .

Sandelowsky H, Natalishvili N, Krakau I, Modin S, Ställberg B, Nager A. COPD management by Swedish general practitioners – baseline results of the PRIMAIR study. Scand J Prim Health Care. 2018 Jan 2 [cited 2023 Nov 15];36(1):5. Available from: /pmc/articles/PMC5901441/.

Meeraus W, Wood R, Jakubanis R, Holbrook T, Bizouard G, Despres J, et al. COPD treatment pathways in France: a retrospective analysis of electronic medical record data from general practitioners. Int J Chron Obstruct Pulmon Dis. 2018 Dec 18 [cited 2023 Nov 15];14:51–63. Available from: https://www.dovepress.com/copd-treatment-pathways-in-france-a-retrospective-analysis-of-electron-peer-reviewed-fulltext-article-COPD .

Come migliorare la qualità di vita dei pazienti colpiti da bronco-pneumopatia cronica e dei loro caregiver? | Azienda Ospedaliera Nazionale SS. Antonio e Biagio e Cesare Arrigo Alessandria. [cited 2023 Nov 15]. Available from: https://www.ospedale.al.it/it/comunicazione/notizie/come-migliorare-qualita-vita-pazienti-colpiti-bronco-pneumopatia-cronica-loro-caregiver .

Aiello F, Alunni A, Berardi M, Bordoni F, Calzolari M, Coviello AP, et al. Medicina Pratica L’associazione LABA-LAMA nella gestione del paziente con BPCO-Il punto di vista della Medicina Generale. Rivista Società Italiana di Medicina Generale n 3 • [Internet]. [cited 2023 Nov 15];29:2022. Available from: https://goldcopd.org/ .

ALLEGATOA alla Dgr n. 206 del 24 febbraio 2015.

Miravitlles M, Soler-Cataluña JJ, Calle M, Molina J, Almagro P, Quintano JA, et al. Spanish Guidelines for Management of Chronic Obstructive Pulmonary Disease (GesEPOC) 2017. Pharmacological Treatment of Stable Phase. Arch Bronconeumol. 2017 Jun 1 [cited 2023 Nov 15];53(6):324–35. Available from: https://pubmed.ncbi.nlm.nih.gov/28477954/ .

NHS England » Ambitions for Palliative and End of Life Care: A national framework for local action 2021–2026. [cited 2023 May 29]. Available from: https://www.england.nhs.uk/publication/ambitions-for-palliative-and-end-of-life-care-a-national-framework-for-local-action-2021-2026/ .

POCKET GUIDE TO COPD DIAGNOSIS, MANAGEMENT, AND PREVENTION A Guide for Health Care Professionals. 2020 [cited 2023 May 29]; Available from: www.goldcopd.org .

Rayner J, Khan T, Chan C, Wu C. Illustrating the patient journey through the care continuum: leveraging structured primary care electronic medical record (EMR) data in Ontario, Canada using chronic obstructive pulmonary disease as a case study. Int J Med Inform. 2020 Aug 1 [cited 2023 Jun 3];140. Available from: https://pubmed.ncbi.nlm.nih.gov/32473567/ .

Walker S, Andrew S, Hodson M, Roberts CM. Stage 1 development of a patient-reported experience measure (PREM) for chronic obstructive pulmonary disease (COPD). NPJ Prim Care Respir Med. 2017 Dec 1 [cited 2023 Jun 3];27(1). Available from: https://pubmed.ncbi.nlm.nih.gov/28740181/ .

Agustí A, Celli BR, Criner GJ, Halpin D, Anzueto A, Barnes P, et al. Global initiative for chronic obstructive lung disease 2023 report: GOLD executive summary. Eur Respir J. 2023 Apr 1 [cited 2023 May 29];61(4):2300239. Available from: https://erj.ersjournals.com/content/61/4/2300239 .

Reddel HK, Bacharier LB, Bateman ED, Brightling CE, Brusselle GG, Buhl R, et al. Global Initiative for Asthma Strategy 2021 Executive Summary and Rationale for Key Changes. Am J Respir Crit Care Med [Internet]. 2022 Jan 1 [cited 2023 Jun 3];205(1):17–35. Available from: https://pubmed.ncbi.nlm.nih.gov/34658302/ .

Jones PW, Watz H, Wouters EFM, Cazzola M. COPD: the patient perspective. Int J Chron Obstruct Pulmon Dis. 2016 [cited 2023 Jun 3];11 Spec Iss(Spec Iss):13–20. Available from: https://pubmed.ncbi.nlm.nih.gov/26937186/ .

Aggarwal AN, Gupta D, Jindal SK. The relationship between FEV1 and peak expiratory flow in patients with airways obstruction is poor. Chest. 2006 [cited 2023 Jun 3];130(5):1454–61. Available from: https://pubmed.ncbi.nlm.nih.gov/17099024/ .

2023 GOLD guidelines for chronic obstructive pulmonary disease. [cited 2023 Jun 26]. Available from: https://www.jwatch.org/na56004/2023/04/20/2023-gold-guidelines-chronic-obstructive-pulmonary-disease .

Oliver SM. Living with failing lungs: the doctor–patient relationship. Fam Pract. 2001 Aug 1 [cited 2023 Jun 3];18(4):430–9. Available from: https://academic.oup.com/fampra/article/18/4/430/620192 .

JIACI · J Invest Allergol Clin Immunol. [cited 2023 Jun 3]. Available from: https://www.jiaci.org/summary/vol16-issue4-num90 .

Martínez-Guiu J, Arroyo-Fernández I, Rubio R. Impact of patients’ attitudes and dynamics in needs and life experiences during their journey in COPD: an ethnographic study. Expert Rev Respir Med. 2022 [cited 2023 Jun 3];16(1):121–32. Available from: https://pubmed.ncbi.nlm.nih.gov/34238094/ .

Lainscak M, Gosker HR, Schols AMWJ. Chronic obstructive pulmonary disease patient journey: hospitalizations as window of opportunity for extra-pulmonary intervention. Curr Opin Clin Nutr Metab Care. 2013 May [cited 2023 Jun 3];16(3):278–83. Available from: https://pubmed.ncbi.nlm.nih.gov/23507875/ .

Kim-Dorner SJ, Schmidt T, Kuhlmann A, Graf von der Schulenburg JM, Welte T, Lingner H. Age- and gender-based comorbidity categories in general practitioner and pulmonology patients with COPD. NPJ Prim Care Respir Med. 2022 Dec 1 [cited 2023 Nov 15];32(1). Available from: /pmc/articles/PMC9061861/.

Maestri R, Vitacca M, Paneroni M, Zampogna E, Ambrosino N. Gender and age as determinants of success of pulmonary rehabilitation in individuals with chronic obstructive pulmonary disease. Arch Bronconeumol. 2023 Mar 1 [cited 2023 Nov 15];59(3):174–7. Available from: https://www.archbronconeumol.org/en-gender-age-as-determinants-success-articulo-S0300289622005683 .

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Acknowledgements

Rebus Medical (St Nicholas House, 31-34 High St, Bristol BS1 2AW, United Kingdom) was responsible for contacting the patients, data collection, and statistical analyses. The authors thank Andrea Rossi for the medical writing support and the Chiesi and Rebus study team for the management of the Human factors study (Marta Lombardini, Ilaria Milesi, Lorenzo Ventura, Veronica Giminiani, Massimo Savella, Elena Zeni, Elena Nudo, Lisa Forde, Shivani Bhalsod, Elsie Barker, and Chris White).

The authors thank the patients, the interviewers, and the translators who made this study possible.

All the activities were funded by Chiesi Farmaceutici S.p.A. (Parma, Italy).

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NS contributed to the design of the study and critically revised the outcomes according to the clinical needs from a specialistic point of view. AW contributed to the design of the study and critically revised the outcomes according to the clinical needs from a general practitioner’s point of view. CW designed the study, managed and coordinated the study activities. EN, MS, and ML contributed to the design of the study and critically revised the outcomes from a treatment producer’s point of view. All authors critically revised the drafted article and read and approved the final manuscript.

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The DL 20 marzo 2008 specifies that interviews to the patients without any clinical intervention (as the present study) are not considered observational studies and, thus, don't need to be submitted to the revision and approval of an Ethical committee.

All patients provided their informed consent to participate in this study. The informed consent included statements that required participants to agree to maintain confidentiality regarding the information shared during the study session, as well as described the conditions for the collection, use, processing, retention, and transfer of their personal data (including personally identifiable information and personal health information).

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Scichilone, N., Whittamore, A., White, C. et al. The patient journey in Chronic Obstructive Pulmonary Disease (COPD): a human factors qualitative international study to understand the needs of people living with COPD. BMC Pulm Med 23 , 506 (2023). https://doi.org/10.1186/s12890-023-02796-8

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The physical, mental, and social impact of COPD in a population-based sample: results from the Longitudinal Aging Study Amsterdam

• Frits M. E. Franssen 1 , 2 , 3 ,
• Dionne E. Smid 1 ,
• Dorly J. H. Deeg 4 ,
• Martijn Huisman 4 , 5 ,
• Jan Poppelaars 4 , 5 ,
• Emiel F. M. Wouters 1 , 3 &
• Martijn A. Spruit 1 , 2 , 6  

npj Primary Care Respiratory Medicine volume  28 , Article number:  30 ( 2018 ) Cite this article

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• Chronic obstructive pulmonary disease
• Respiratory signs and symptoms

Chronic obstructive pulmonary disease (COPD) is associated with substantial health impact that may already become apparent in early disease. This study aims to examine the features of subjects with COPD in a Dutch population-based sample and compare their physical status, mental status, and social status to non-COPD subjects. This study made use of Longitudinal Aging Study Amsterdam (LASA) data. Demographics, clinical characteristics, self-reported diseases, post-bronchodilator spirometry, physical, mental, and social status were assessed. A number of 810 subjects (50.5% male, mean age 60.5 ± 2.9 years) were included. Subjects with COPD ( n  = 68, mean FEV 1 67.6 [IQR 60.4–80.4] %.) had a slower walking speed than non-COPD subjects, p  = 0.033. When compared to non-COPD subjects, COPD subjects gave a lower rating on their health (physical subscale of SF-12: 15 [IQR 16.0–19.0] vs. 18 [IQR 11.0–17.0] points) and life (EQ5D VAS: 75 [IQR 70.0–90.0] vs. 80 points [IQR 65.0–85.5]) surveys. COPD subjects also had a more impaired disease-specific health status (CAT: 9.5 ± 5.9 vs. 6.7 ± 5.2, respectively), were less likely to have a partner (69% vs. 84%, respectively) and received emotional support less often (24% vs. 36%, respectively) compared to non-COPD subjects (All comparisons p  < 0.001). In a population-based sample, subjects with COPD had a reduced physical performance, a more impaired disease-specific health status and were more socially deprived compared to non-COPD subjects. These impairments need to be taken into consideration when setting up a management program for patients with mild COPD.

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Introduction.

Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity and mortality around the world. 1 It is well recognized that the burden of disease for the individual patient is only partially reflected by the degree of airflow limitation. 2 Most studies aimed at investigating the burden of disease were performed in selected populations of diagnosed patients. 3 , 4 Subjects with a less significant smoking history (≤15 pack years), comorbidities with COPD-like symptoms, less frequent exacerbations, and a better lung function were often excluded from these studies. 5 In addition, subjects with COPD visiting a chest physician or referred for pulmonary rehabilitation were overrepresented. 3 , 5 While undiagnosed subjects seem to be healthier than subjects with a diagnosis of obstructive lung disease, studies have shown that these subjects have an impaired health and functional status, and increased risk of death compared to non-COPD subjects. 6 , 7 This highlights the importance of increasing our understanding of COPD in a broader population without exclusion of patients with mild to moderate COPD, a less pronounced smoking history and/or specific comorbidities in order to improve the generalizability and clinical significance of findings.

COPD is nowadays recognized as a multicomponent disease, despite being defined by the presence of persistent airflow limitation. The disease also affects systems and organs outside the lungs, the so-called systemic effects of COPD (e.g., weight loss, muscle dysfunction, cardiovascular disease). 8 For instance, previous research indicated that subjects with COPD have a lower physical activity level, even early in the disease process, 9 a substantially impaired lower limb muscle and handgrip strength, 10 and a lower exercise capacity in comparison with non-COPD subjects. 11 Subjects with COPD also have a worse mental status compared to non-COPD subjects (e.g., more symptoms of anxiety and depression), a lower quality of life, more cognitive dysfunction and more symptoms of fatigue. 12 , 13 , 14 While it was shown that the diagnosis of COPD has social consequences, 15 , 16 little is known about how they manifest in daily living (e.g., personal network size, the frequency of daily support or satisfaction with received help). The combination of the pulmonary abnormalities and these systemic effects of COPD determines the integrated health status. 17 Therefore, the current study had the following aims: (1) to study the features (e.g., age, gender, smoking history, lung function, comorbidities) of subjects with COPD in a Dutch population-based sample and (2) to compare physical, mental, and social status in this sample with a non-COPD sample from the same population.

In total, 889 subjects were included in the measurement wave in 2012/13. Of those, 810 subjects completed spirometry (see appendix Figure E1 for flow-chart), of which 742 subjects (91.6%) had a FEV 1 /FVC above the 5th percentile and 68 subjects (8.4%) fulfilled the diagnostic criterion for chronic airflow limitation; 18 GOLD grade 1; 43 GOLD grade 2; 5 GOLD grade 3; and 2 GOLD grade 4. Of these, 68 subjects with COPD, 27 subjects (40%) were previously diagnosed with a respiratory disease (self-reported).

Features of the COPD subjects

Features of the study subjects are presented in Table 1 . Subjects with and without COPD were comparable in terms of age, gender distribution, BMI and blood pressure. While previous cardiovascular comorbidities and diabetes were more frequently present in subjects with COPD than in those without, statistical significance was not reached. Notably, a high percentage of incontinence was found in both groups (non-COPD subjects: 15.9%, and COPD subjects: 14.7%). COPD subjects were more likely to be current smokers, had more pack-years and used more medications than non-COPD subjects.

Physical status

COPD subjects rated their physical health worse ( p  < 0.001) and walked more slowly on a distance of 6 meters ( p  = 0.033) compared to non-COPD subjects, see Table 2 . The number of falls in the last year, the experience of pain, sleep quality, self-reported sedentary behavior, handgrip strength, and use of aids in daily life were comparable between groups. Noteworthy was the high percentage of subjects who experienced pain (non-COPD subjects: 27.4%, and COPD subjects: 31.3%) in both groups.

Mental status

A large proportion of subjects with COPD had neither a positive nor a negative view of their overall life. However, COPD subjects had a more impaired disease-specific health status and rated their health less positive than non-COPD subjects (Table 3 ). Cognitive status, depressive symptoms, symptoms of anxiety, generic health status, and mental status were comparable between groups.

Social status

Subjects with COPD less frequently had a partner and, when having a partner, they were less likely to be ‘very satisfied’ with the daily support they received from their partner than non-COPD subjects. Subjects with COPD also perceived emotional support less often compared to non-COPD subjects (Table 4 ). Marital status, personal network size, instrumental support, loneliness, receiving help and employment status were comparable between groups.

This study aimed to investigate the physical, mental and social status of subjects with COPD in a population-based sample in the Netherlands. Despite a mild-to-moderate degree of airflow limitation, subjects with COPD had significant impairments in specific measures of physical, mental and social status compared to non-COPD subjects.

The impact of COPD on physical, mental and/or social status has been demonstrated in multiple studies, mostly including subjects with moderate to very severe COPD recruited at outpatient clinics. 14 , 16 , 18 , 19 , 20 However, this may limit the external validity of these findings toward subjects living with COPD in the general population. The current study shows that COPD subjects with a mean age of 60 years and a mild-to-moderate degree of airflow limitation have a deteriorated physical, mental, and social status when compared to non-COPD subjects. The fact that the subjects with and without COPD had a comparable age, gender distribution, BMI and an equal number of self-reported comorbidities, suggests that the presence of mild-to-moderate COPD may be the main driver of these impairments.

Physical, mental, and social impact of COPD

Corresponding to the current study, the HELP-COPD study suggested that physical, psychological, social support should be offered from mild disease, routinely providing a holistic approach throughout the life-long course of the disease. 21 Thus, holistic support should not be left until severe disease when the burden of disease has already become disabling.

Prior research regarding the physical impact of COPD found a high proportion of COPD subjects experiencing pain and incontinence 22 , 23 as well as reduced physical performance when compared to non-COPD subjects. 9 , 11 The present study also showed that subjects with mild to moderate COPD have a slower walking speed and report lower values on self-rated health surveys compared to non-COPD subjects. Slow walking speed has been associated with disability and increased risk of hospitalization and mortality in patients with moderate to severe COPD. 24 On the other hand, physical measurements, like sedentary behavior, handgrip strength, number of falls or use of daily aids were comparable. Though, we should take into account that only a categorization was made in disease severity based on FEV 1 % predicted, which is poorly associated with the degree of lung emphysema. 25 The question remains which factors cause these specific impairments in physical status, while other physical parameters were comparable between subjects with and without COPD. Differences in self-rated health between subjects with and without COPD could be explained by influences of subjective/self-perceived measurement of physical status (e.g., personal fulfillment or expectations). 26 It can also be hypothesized that subjects already experience dyspnea and/or fatigue during daily activities at an early stage of the disease. 27 Soumagne and colleagues indicate that lower physical activity can be caused by the nature of symptom development and adaptations to minimize dyspnea provocation. 28 These questions need to be addressed in future studies. Nevertheless, subjects with a relatively preserved lung function, diagnosed with COPD, experience physical symptoms. This is supported by previous research, indicating that patients with preclinical COPD are physically more inactive than smoking non-COPD peers. 9 Also, there is growing evidence of significant respiratory morbidity in smokers with preserved spirometry. 29

With regard to mental status, a more impaired disease-specific health status was observed in subjects with COPD and they rated their health worse than non-COPD subjects, which is in line with previous literature. 6 , 14 However, it should be taken into account that the instruments used to assess health status (CAT, EQ5D, and VAS) largely focus on the patients’ personal perspective on bodily sensations and limitations in daily living. These measurements direct less attention to emotional consequences, accentuating the influence of daily limitations and need for adequate management of COPD. No significant differences in cognitive function and mood status were observed between the two groups. In contrast, previous literature showed that subjects with COPD have more symptoms of anxiety and depression and more cognitive dysfunction compared to non-COPD controls. 13 , 19 Contradictory results can be explained by the fact that studies were performed with a more severe COPD population, not representing the general COPD population. Overall, the current results indicate that the largest proportion of subjects with COPD from a general population barely experience any mental symptoms.

New insights were gained relating to social consequences of COPD. Subjects with COPD less frequently had a partner, rated daily support from their partner less positively and did not receive emotional support as often as non-COPD subjects. As the current study showed no differences in personal network size and feelings of loneliness between subjects with and without COPD, it appears that the shortage of emotional support does not directly depend on the number of people in their network. This leads to the assumption that subjects with COPD have a higher need for emotional support, which was also found in previous research. 30 Reduced support may be explained by the fact that subjects with COPD and their partner or caregiver are confronted with multiple limitations in daily living and often have different perceptions on the disease. 31 Another study showed that, in order to cope with the disease, partners of COPD subjects are very important for the patient. 32

Possible consequences for clinical practice

Healthcare professionals should be aware of the fact that subjects with mild COPD in the general population may experience specific impairments in physical, mental and social status. This needs to be taken into consideration when setting up COPD management programs and/or programs to monitor disease progression. Concerning physical status, this can be applied by giving education about the influence of COPD on physical status or provide physiotherapy/physical activity coaching even at an early stage of the disease. 33 Results with regard to mental status imply that a large proportion of COPD subjects do not experience psychological symptoms. This may suggest that these subjects would sufficiently benefit from a management program with a lower intensity, and presumably, lower healthcare costs. 34 Assessment of physical, mental and social status at the start of treatment may identify these subjects. However, the cost-effectiveness remains to be established. Early assessment would also provide the opportunity to identify COPD subjects with higher needs for social support and involve close family, friends, and other informal caregivers (i.e., a patient’s social system) in COPD care programs. It was recently shown that unhealthy lifestyle and morbidities are common in resident relatives of COPD patients. 35 Whether and to what extent these suggestions positively influence physical, mental, or social status of patients remains to be determined.

The present Dutch healthcare guidelines provide comprehensive directives about COPD management implemented by general practitioners, i.e., focusing on airflow limitation, general deterioration, symptoms, and health status. 36 The results of the current study support these guidelines, as airflow limitation and specific measures of physical and mental status differed significantly between subjects with and without COPD. However, healthcare is not provided to a large proportion of undiagnosed COPD subjects. Since the current study showed that COPD has an impact on specific aspects of all three areas (physical, mental, and social), the necessity of detecting COPD in the general population is emphasized. In the current healthcare system, detection of COPD mainly consists of performing post-bronchodilator spirometry. 37 Other studies suggest that we should, for example, increase awareness of COPD in smokers 38 or apply specifically developed questionnaires assessing symptoms 39 to uncover COPD in the general population. Based on the current results, it is recommended that, in addition to the current guidelines, assessment of functional and health status in subjects with an increased risk for COPD (e.g., a high number of pack-years/current smokers) be made.Instruments have to be quick and easy to implement into clinical practice. 40 , 41 Assessment of functional status and health status should be performed for diagnostic purposes and assess the impact of COPD.

Limitations

A limitation of the current study is that a relatively small number of subjects with COPD participated in the current study. This could be anticipated based on previously published prevalence rates of COPD in a general population 42 and probably was even more pronounced as the current population was slightly younger than populations examined in previous studies including the Burden of Obstructive Lung Disease (BOLD) study. 43 Although Longitudinal Aging Study Amsterdam (LASA) is considered a nationally representative sample for the included age range, 44 results may not be generalized to younger or older age groups. Third, a history of respiratory diseases was defined as self-reported chronic bronchitis, asthma, emphysema, or COPD despite the fact that obstructive lung diseases are frequently underpresented to physicians and underdiagnosed. 45 It is well recognized that several comorbidities including cardiovascular and peripheral artery disease are more common in COPD than in non-COPD subjects, 46 , 47 but no statistically significant differences were shown in the present study. This is probably due to the limited number of patients. Finally, measurements were conducted cross-sectionally, not providing the possibility to determine the causal direction between the physical, mental, and social impact and COPD. It is possible for the causal direction to go the other way, where symptoms are prior to COPD. However, previous longitudinal research suspects otherwise. 48

Subjects with mild-to-moderate COPD identified in a general population sample in the Netherlands showed some specific impairments in measures of physical, mental and social status compared to non-COPD subjects. The observations of this study support the use of instruments to assess integrated health status early in the course of the disease and the importance of managing mild-to-moderate COPD patients beyond the degree of lung function impairment.

Current data are part of the LASA, an ongoing longitudinal study designed to determine predictors and consequences of physical, emotional, cognitive and social functioning. LASA is based on a nationally representative sample of older adults from three

regions in the Netherlands. 44 Ethical approval for the LASA study was given by the Medical Ethics Committee of the VU University Medical Center Amsterdam (METC number 2012/361). Extended information of the LASA study design has been published. 44 Methods were performed in accordance with relevant regulations and guidelines.

Participants

Subjects aged between 55 and 65 years were recruited between November 2012 and November 2013. Subjects were randomly sampled from 11 municipality registers in the regions Amsterdam, Zwolle, and Oss in the Netherlands. They received information about the study by letter, were contacted by phone and, when approved, subsequently interviewed in their home environment. Other than age, no inclusion or exclusion criteria were defined. All subjects gave written informed consent before entering the study. Only data from subjects who completed the post-bronchodilator spirometry were included in the current analysis. The details about recruitment and assessment have been described in a published protocol. 49

Subjects were questioned if they had chronic bronchitis, emphysema, or COPD. Post-bronchodilator spirometry (forced expiratory volume in the first second, FEV 1 , and forced vital capacity, FVC) was performed to assess COPD. Spirometry was conducted with a Vmax Vyntus SPIRO—USB PC Spirometer from CareFusion (Höchberg, Germany), 15 min after inhalation of 200 μg salbutamol. The following criteria for acceptable spirometry were applied: sufficient number (≥3) of successful maneuvers, two highest FEV 1 or FVC values being within 150 ml, a (maximal volume) exhalation time of at least 6 s and volume–time curve showing no change in volume (<0.025 L) for ≥1 s. 50 In order to avoid misdiagnosis in this elderly population, COPD was defined according to the lower limit of normal (LLN) instead of the fixed ratio. 51 Subjects with COPD were categorized in traditional GOLD grades for airflow limitation; grade 1 (FEV 1  > 80% predicted), grade 2 (FEV 1 50–80% predicted), grade 3 (FEV 1 30–50% predicted) or grade 4 (FEV 1  < 30% predicted). 1

Assessment of integrated health status

Demographics, smoking history, blood pressure, body mass index (BMI), self-reported comorbid diseases (heart diseases, peripheral artery diseases, diabetes, cerebrovascular disease incontinence, osteoarthritis, rheumatoid arthritis, cancer, and other chronic diseases) and medical history were recorded.

Physical status was assessed by: self-reported health, number of falls in the past year, the experience of pain, sleep quality, self-reported sedentary behavior, handgrip strength, walking 6 m (maximal pace, including 180° turn after 3 m), and use of aids during daily life. Mental status was measured as: cognition using the 15 Words Test (15WT) 52 overall life satisfaction, mood status was assessed using the Hospital Anxiety and Depression Scale-Anxiety subscale (HADS-A) 53 and the Center for Epidemiologic Studies Depression Scale (CES-D), 54 disease-specific health status was assessed using the COPD assessment test (CAT) 55 generic health status was assessed using EuroQuol 5D and its Visual Analogue Scale (EQ5D VAS) 56 as well as the 12-Item Short Form Health Survey (SF-12). Social status was assessed as the interviewer asking questions about whether or not the subject had a partner, marital status, daily support from the partner, personal network size, instrumental and emotional support, loneliness (measured using the De Jong Gierveld loneliness scale, 57 domestic help or help with self-care, and employment. 49

Subjects with and without COPD were compared. Variables were tested for normality with a Skewness and Kurtosis test. Mean and standard deviation (SD), median and interquartile range (IQR), and/or proportions were used as appropriate. Categorical variables were described as absolute numbers and frequencies. A Mann–Whitney U test and one-way analysis of variances (ANOVA) were applied for normally distributed variables. Where appropriate, post hoc least significant difference (LSD) multiple comparisons were performed. A Kruskal–Wallis test was assessed for non-normally distributed variables and a Chi-square test was applied for categorical variables. A p -value of less than or equal to 0.05 was considered statistically significant. Statistics were performed with SPSS V.20.0.

Data availability

LASA data are available for research. To obtain data, researchers need to submit an analysis proposal that is evaluated by the LASA Steering Group. The LASA Steering Group has adopted a policy of open sharing of data with interested researchers for specific research questions on aging-related issues. More information on data requests can be found at the study website: www.lasa-vu.nl .

Vogelmeier, C. F. et al. Global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease 2017 report. GOLD executive summary. Am. J. Respir. Crit. Care. Med. 195 , 557–582 (2017).

Article   PubMed   CAS   Google Scholar  

Smid, D. E. et al. Redefining cut-points for high symptom burden of the global initiative for chronic obstructive lung disease classification in 18,577 patients with chronic obstructive pulmonary disease. J. Am. Med. Dir. Assoc. 18 , 1097e11–1097e24 (2017).

Article   Google Scholar  

Smid, D. E. et al. Burden of COPD in patients treated in different care settings in the Netherlands. Respir. Med. 118 , 76–83 (2016).

Article   PubMed   Google Scholar  

Foo, J. et al. Continuing to confront COPD international patient survey: economic impact of COPD in 12 countries. PLoS One 11 , e0152618 (2016).

Article   PubMed   PubMed Central   CAS   Google Scholar  

Kruis, A. L. et al. Primary care COPD patients compared with large pharmaceutically-sponsored COPD studies: an UNLOCK validation study. PLoS One 9 , e90145 (2014).

Coultas, D. B., Mapel, D., Gagnon, R. & Lydick, E. The health impact of undiagnosed airflow obstruction in a national sample of United States adults. Am. J. Respir. Crit. Care. Med. 164 , 372–377 (2001).

Martinez, C. H. et al. Undiagnosed obstructive lung disease in the United States. Associated factors and long-term mortality. Ann. Am. Thorac. Soc. 12 , 1788–1795 (2015).

Article   PubMed   PubMed Central   Google Scholar  

Rennard, S. I. et al. Identification of five chronic obstructive pulmonary disease subgroups with different prognoses in the ECLIPSE cohort using cluster analysis. Ann. Am. Thorac. Soc. 12 , 303–312 (2015).

Van Remoortel, H. et al. Daily physical activity in subjects with newly diagnosed COPD. Thorax 68 , 962–963 (2013).

Maltais, F. et al. An official American Thoracic Society/European Respiratory Society statement: update on limb muscle dysfunction in chronic obstructive pulmonary disease. Am. J. Respir. Crit. Care. Med. 189 , e15–62 (2014).

Franssen, F. M., Broekhuizen, R., Janssen, P. P., Wouters, E. F. & Schols, A. M. Effects of whole-body exercise training on body composition and functional capacity in normal-weight patients with COPD. Chest 125 , 2021–2028 (2004).

Antoniu, S. A., Petrescu, E., Stanescu, R., Anisie, E. & Boiculese, L. Impact of fatigue in patients with chronic obstructive pulmonary disease: results from an exploratory study. Ther. Adv. Respir. Dis. 10 , 26–33 (2016).

Wong, T. S. et al. Depressive disorders in older patients with chronic obstructive pulmonary disease (COPD) in Hong Kong: a controlled study. Aging Ment. Health 18 , 588–592 (2014).

Peruzza, S. et al. Chronic obstructive pulmonary disease (COPD) in elderly subjects: impact on functional status and quality of life. Respir. Med. 97 , 612–617 (2003).

Janssen, D. J., Wouters, E. F. & Spruit, M. A. Psychosocial consequences of living with breathlessness due to advanced disease. Curr. Opin. Support Palliat. Care. 9 , 232–237 (2015).

Johnson, J. L., Campbell, A. C., Bowers, M. & Nichol, A. M. Understanding the social consequences of chronic obstructive pulmonary disease: the effects of stigma and gender. Proc. Am. Thorac. Soc. 4 , 680–682 (2007).

Agusti, A. & Soriano, J. B. COPD as a systemic disease. COPD 5 , 133–138 (2008).

Agusti, A. et al. Characterisation of COPD heterogeneity in the ECLIPSE cohort. Respir. Res. 11 , 122 (2010).

Bratek, A. et al. Depressiveness, symptoms of anxiety and cognitive dysfunctions in patients with asthma and chronic obstructive pulmonary disease (COPD): possible associations with inflammation markers: a pilot study. J. Neural Transm. 122 , S83–91 (2015).

Ju, C. & Chen, R. Factors associated with impairment of quadriceps muscle function in Chinese patients with chronic obstructive pulmonary disease. PLoS One 9 , e84167 (2014).

Buckingham, S. et al. HELPing older people with very severe chronic obstructive pulmonary disease (HELP-COPD): mixed-method feasibility pilot randomised controlled trial of a novel intervention. NPJ Prim. Care Respir. Med. 25 , 15020 (2015).

Janssen, D. J., Wouters, E. F., Parra, Y. L., Stakenborg, K. & Franssen, F. M. Prevalence of thoracic pain in patients with chronic obstructive pulmonary disease and relationship with patient characteristics: a cross-sectional observational study. BMC Pulm. Med. 16 , 47 (2016).

Burge, A. T. et al. Prevalence and impact of urinary incontinence in men with chronic obstructive pulmonary disease: a questionnaire survey. Physiotherapy 103 , 53–58 (2017).

Andrianopoulos, V. et al. Prognostic value of variables derived from the six-minute walk test in patients with COPD: results from the ECLIPSE study. Respir. Med. 109 , 1138–1146 (2015).

Makita, H. et al. Characterisation of phenotypes based on severity of emphysema in chronic obstructive pulmonary disease. Thorax 62 , 932–937 (2007).

Leidy, N. K. Subjective measurement of activity in chronic obstructive pulmonary disease. COPD 4 , 243–249 (2007).

Vaes, A. W. et al. Task-related oxygen uptake during domestic activities of daily life in patients with COPD and healthy elderly subjects. Chest 140 , 970–979 (2011).

Soumagne, T. et al. Asymptomatic subjects with airway obstruction have significant impairment at exercise. Thorax 71 , 804–811 (2016).

Woodruff, P. G. et al. Clinical significance of symptoms in smokers with preserved pulmonary function. N. Eng. J. Med. 374 , 1811–1821 (2016).

Article   CAS   Google Scholar  

Hand, C., Law, M., McColl, M. A., Hanna, S. & Elliott, S. An examination of social support influences on participation for older adults with chronic health conditions. Disabil. Rehabil. 36 , 1439–1444 (2014).

Nakken, N. et al. Patient versus proxy-reported problematic activities of daily life in patients with COPD. Respirology 22 , 307–314 (2017).

Binder, M. et al. [Helpful and stressful factors in coping with COPD in patients and their partners - a qualitative study]. Praxis 103 , 75–83 (2014).

Demeyer, H. et al. Physical activity is increased by a 12-week semiautomated telecoaching programme in patients with COPD: a multicentre randomised controlled trial. Thorax 72 , 415–423 (2017).

Newman, S., Steed, L. & Mulligan, K. Self-management interventions for chronic illness. Lancet 364 , 1523–1537 (2004).

Nakken, N. et al. Health status and morbidities in resident relatives of patients With COPD. J. Am. Med. Dir. Assoc. 17 , 276 e1–8 (2016).

van den Aardweg, J. G. [The revised NHG guideline ‘COPD’: a new approach with old limitations]. Ned. Tijdschr. Geneeskd. 159 , A9056 (2015).

PubMed   Google Scholar  

Soriano, J. B., Zielinski, J. & Price, D. Screening for and early detection of chronic obstructive pulmonary disease. Lancet 374 , 721–732 (2009).

Mun, S. Y. et al. Awareness of chronic obstructive pulmonary disease in current smokers: a nationwide survey. Korean J. Intern. Med. 30 , 191–197 (2015).

Dirven, J. A. et al. Early detection of COPD in general practice: implementation, workload and socioeconomic status. A mixed methods observational study. Prim. Care. Respir. J. 22 , 338–343 (2013).

Ringbaek, T., Martinez, G. & Lange, P. A comparison of the assessment of quality of life with CAT, CCQ, and SGRQ in COPD patients participating in pulmonary rehabilitation. COPD 9 , 12–15 (2012).

Bisca, G. W., Morita, A. A., Hernandes, N. A., Probst, V. S. & Pitta, F. Simple lower limb functional tests in patients with chronic obstructive pulmonary disease: a systematic review. Arch. Phys. Med. Rehabil. 96 , 2221–2230 (2015).

Atsou, K., Chouaid, C. & Hejblum, G. Variability of the chronic obstructive pulmonary disease key epidemiological data in Europe: systematic review. BMC Med. 9 , 7 (2011).

Vanfleteren, L. E., Franssen, F. M., Wesseling, G. & Wouters, E. F. The prevalence of chronic obstructive pulmonary disease in Maastricht, the Netherlands. Respir. Med. 106 , 871–874 (2012).

Huisman, M. et al. Cohort profile: the Longitudinal Aging Study Amsterdam. Int. J. Epidemiol. 40 , 868–876 (2011).

Wouters, E. F. The burden of COPD in The Netherlands: results from the Confronting COPD survey. Respir. Med. 97 , S51–59 (2003).

Houben-Wilke, S. et al. Peripheral artery disease and its clinical relevance in patients with chronic obstructive pulmonary disease in the COPD and systemic consequences-comorbidities network study. Am. J. Respir. Crit. Care. Med. 195 , 189–197 (2017).

Miller, J. et al. Comorbidity, systemic inflammation and outcomes in the ECLIPSE cohort. Respir. Med. 107 , 1376–1384 (2013).

de Torres, J. P. et al. The importance of symptoms in the longitudinal variability of clusters in COPD patients: a validation study. Respirology 23 , 485–491 (2017).

Hoogendijk, E. O. et al. The Longitudinal Aging Study Amsterdam: cohort update 2016 and major findings. Eur. J. Epidemiol. 31 , 927–945 (2016).

Miller, M. R. et al. Standardisation of spirometry. Eur. Respir. J. 26 , 319–338 (2005).

van Dijk, W. et al. Clinical relevance of fixed ratio vs lower limit of normal of FEV1/FVC in COPD: patient-reported outcomes from the CanCOLD cohort. Ann. Fam. Med. 13 , 41–48 (2015).

Schmand, B., Bakker, D., Saan, R. & Louman, J. [The Dutch Reading Test for Adults: a measure of premorbid intelligence level]. Tijdschr. Gerontol. Geriatr. 22 , 15–19 (1991).

PubMed   CAS   Google Scholar  

Zigmond, A. S. & Snaith, R. P. The hospital anxiety and depression scale. Acta Psychiatr. Scand. 67 , 361–370 (1983).

Radloff, L. S. The use of the Center for Epidemiologic Studies Depression Scale in adolescents and young adults. J. Youth Adolesc. 20 , 149–166 (1991).

Jones, P. W. et al. Development and first validation of the COPD Assessment Test. Eur. Respir. J. 34 , 648–654 (2009).

Brettschneider, C. et al. Validity and responsiveness of the EQ-5D in assessing and valuing health status in patients with somatoform disorders. Health Qual. Life Outcomes 11 , 3 (2013).

van Tilburg, T. G. & de Jong Gierveld, J. [Reference standards for the loneliness scale]. Tijdschr. Gerontol. Geriatr. 30 , 158–163 (1999).

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Acknowledgements

We are grateful to the all the subjects who were willing to participate in the current study. The authors would like to thank M. Akkermans and J. Oosterbaan for helping with collecting and converting the spirometry data. We thank S. Keene for English language editing. The Longitudinal Aging Study Amsterdam was financially supported by the Ministry of Health, Welfare and Sports (to the VU University; The Longitudinal Aging Study Amsterdam). D.E.S. was financially supported by GlaxoSmithKline (SCO115406).

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F.M.E.F. is the guarantor of the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. D.E.S., M.A.S., E.F.M.W., and F.M.E.F. contributed to the conception and design, interpretation of the data, writing, and critical revision of the research letter. D.J.H.D., M.H., and J.P. contributed to the recruitment of the patients, sharing the data, and critical revision of the manuscript. All the authors read and approved the final version.

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Franssen, F.M.E., Smid, D.E., Deeg, D.J.H. et al. The physical, mental, and social impact of COPD in a population-based sample: results from the Longitudinal Aging Study Amsterdam. npj Prim Care Resp Med 28 , 30 (2018). https://doi.org/10.1038/s41533-018-0097-3

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• Volume 6, Issue 1
• Patient experience of COPD care: outcomes from the British Lung Foundation Patient Passport
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• http://orcid.org/0000-0001-9614-3580 Keir Philip 1 ,
• Stephen Gaduzo 2 ,
• Judith Rogers 3 ,
• Michael Laffan 3 and
• http://orcid.org/0000-0003-3235-0454 Nicholas S Hopkinson 1
• 1 National Heart and Lung Institute , Imperial College London , London , UK
• 2 Primary Care Respiratory Society UK , Knowle , UK
• 3 British Lung Foundation , London , UK
• Correspondence to Dr Keir Philip; keir.philip{at}nhs.net

Introduction The British Lung Foundation (BLF) COPD Patient Passport ( www.blf.org.uk/passport ) was developed as a resource to help people with chronic obstructive pulmonary disease (COPD) and clinicians to consider the care received and identify essential omissions. We used the online data collected to evaluate the delivery of COPD care in the UK from a patient perspective.

Methods The patient passport consists of 13 questions relating to key aspects of COPD care including: spirometry confirmation of diagnosis, understanding their diagnosis, support and a written management plan, vaccinations, smoking cessation, physical activity, exercise, eating well, pulmonary rehabilitation, exacerbations, medications and yearly reviews. Data were presented as proportions with an answer corresponding to good care, and plotted over time to identify trends.

Results After removing identifiable duplicates, data from 41 769 entries, completed online between November 2014 and April 2019, remained ( table 1 ). Twenty-four per cent reported getting support to manage their care and a written action plan; 53% could spot the signs of an acute exacerbation; 34% had discussed pulmonary rehabilitation and 41% stated they understood their COPD, and their doctor or nurse had explained where to find information, advice and emotional support. A quarter reported not receiving influenza vaccination and a third of those who smoke were not offered support to quit smoking. Even the strongest areas including spirometry-confirmed diagnosis, and knowing the importance of being active and eating well, achieved only around 80%. Response patterns remained stable or worsened over time.

Discussion Responses to the BLF COPD Patient Passport identify substantial gaps in patients’ experience of care, which did not appear to improve during the 5 years covered. These data provide a unique yet commonly overlooked perspective on care quality, and highlight that new approaches will be needed to meet the ambitions to improve respiratory care set out in the NHS Long Term Plan.

• quality of care

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/ .

https://doi.org/10.1136/bmjresp-2019-000478

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Key messages

What is the key question.

From a patient perspective, are patients receiving the key aspects of good quality care in chronic obstructive pulmonary disease (COPD)?

What is the bottom line?

Substantial gaps exist in patients’ experience of COPD care, which do not appear to have improved over the last 5 years.

Why read on?

These data provide a unique yet commonly overlooked perspective on care quality—the patients’ perspective.

These data highlight that new approaches will be needed to meet the ambitions to improve respiratory care set out in the NHS Long Term Plan.

Introduction

Recent National Institutefor Health and Care Excellence (NICE) guidance for chronic obstructive pulmonary disease (COPD) has emphasised the importance of patient information and self-management. 1 2 Although audits 3 4 can assess process and the delivery of this and other aspects of care, they are less able to show if aspects have been effectively received . A proper assessment of the quality of health services must include patients’ perspectives regarding their care. Patient-reported experience measures 5 and patient-reported outcome measures 6 7 are being developed to capture this, although particularly the former are not yet widely used.

The British Lung Foundation (BLF) COPD Patient Passport is an online tool consisting of 13 questions regarded as core components of COPD care ( table 1 ). It was developed with people with COPD, clinicians in the Northwest England Respiratory Team and the Primary Care Respiratory Society (UK). The intention was to raise awareness among patients on what they should expect from respiratory services and help involve them in their care.

• View inline

British Lung Foundation COPD Patient Passport responses

The passport can be completed online www.blf.org.uk/passport and provides a record of patient experience, relative to a defined standard of care for all people with COPD, similar to a care bundle. 8 9 People with COPD are directed towards this resource by respiratory nurses and doctors during clinical consultations or via targeted online advertising.

Data from online completion provide a resource to analyse the quality of COPD care and potentially to identify trends.

We analysed data from BLF Patient Passport completed between November 2014 and April 2019. The passport is advertised on the BLF website and Facebook.

Patient and public involvement

Patients were involved in the development of the BLF Patient Passport. In particular, small changes in the wording of questions at the end of 2016 (see online supplementary table 1 in the online supplementary material for details), resulted from feedback from patients with COPD to improve clarity and encourage people completing the passport to seek out missing care items that had not been delivered. Patients and public were not involved in the current analysis or presentation of these data in this manuscript. However, the central purpose of this manuscript is to highlight the patient perspective as important when considering quality of care.

Supplemental material

Data analysis.

Data are presented using descriptive statistics. Responses were excluded from the analysis if no answers, or only one answer, was given and for non-UK addresses. Duplicates identified (same answers, postcode and date of completion) were also removed. For the entire sample, and for each question, total percentage of positive responses (indicating appropriate care) was calculated. Data were also grouped into 6 month blocks, and presented in bar charts, to explore possible trends. All analyses were carried out using Stata V.14 (StataCorp).

The initial sample included 44 123 entries. After deletion of duplicate responses as described above, 41 769 remained and were analysed. Results are presented in table 1 . Only 24% reported receiving support to manage their care and a written action plan; only 53% could spot the signs of an acute exacerbation; only 34% had discussed pulmonary rehabilitation (PR). A quarter reported not receiving influenza vaccination and a third of COPD smokers were not offered support to quit smoking. Even the strongest areas, including a spirometry-confirmed diagnosis, vaccination and knowing the importance of being active and eating well, achieved only around 80%.

Patterns of response were generally stable over the 54 months of data collection (see graphs 1–13 in the online supplementary file ), or tended to decline, with the exception of inhaler technique review, which demonstrates a step up in 2016 from around half to two-thirds of patients responding positively, although this may represent an artefact due to a change in the text asking about review ‘every time seen’ to ‘at annual review’ (supplimentary table 1).

This large online sample of UK patients with COPD reveals significant gaps in the delivery of important aspects of patient care and patient understanding of COPD and thus their ability to self-manage. Worryingly, there was no apparent improvement over time, suggesting a need for systemic change.

Significance of findings

The significance of these findings relates both to the impact of omissions in care and to the need for efforts to understand why the system is failing to deliver them and what needs to change in order to improve matters. Self-management, particularly including an exacerbation action plan, improves quality of life and reduces hospital admissions in COPD. 1 The persistently low positive response rate to self-management items, including having a written plan and being able to recognise and act on symptoms of acute exacerbations is concerning as this may translate into preventable and distressing acute hospital admissions.

Pulmonary rehabilitation is one of the highest value COPD interventions. 10 Referral rates to and delivery of PR remain inadequate, both according to national audit data 3 4 and in the present patient survey. Since PR is a highly effective venue for delivering educational and other multidisciplinary components of COPD care, addressing this would likely be mutually reinforcing. The gaps in care here may also help explain the findings from the BLF Breath Test, that among breathless people (Medical Reserach Council (MRC) dyspnoea score > 3), 58% of those who had sought medical advice reported that this had not helped with their breathlessness. 11 A system failure to provide optimal COPD care also contributes to poor access to more specialised treatments such as lung volume reduction procedures. 12 13

Particularly weak areas include understanding of COPD and where to find information; having support to manage COPD and a written plan regarding COPD management; discussion of PR; receiving advice about ongoing exercise and nutrition; identifying and managing exacerbations and having yearly review of their disease and management, with time to ask questions. The NICE guidance 2 emphasises the need for comprehensive written information about COPD, including in self-management plans (eg, BLF materials at blf.org.uk/COPD).

Some areas are slightly better, but still arguably inadequate, including immunisations; smoking cessation (when relevant) and the importance of eating well and staying active. The best areas relate to knowledge of medications and having a COPD diagnosis based on spirometry. These topics have only around 80% responding positively to these questions.

Our findings mirror data from the National Asthma and Chronic Obstructive Pulmonary Disease Audit Programme, 4 from the quality outcomes framework 3 and from the clinical practice research database 14 indicating that key high-value items of care 10 are not being delivered systematically to all patients with COPD, particularly smoking cessation, influenza vaccination and PR. Similar results in audit datasets support the validity of the BLF Patient Passport. In particular, Quality Outcomes Framework (QOF) data report 88% of people with a diagnosis of COPD having had spirometric confirmation of the diagnosis, compared with 81% in the present data. 4 QOF data on influenza vaccination are also similar. According to QOF, 88.7% were reviewed by a health professional in the last 12 months, compared with 70% reported this in our data.

Why has COPD care not improved? The period covered here coincides with the UK Government’s choice to pursue austerity economic policies. These have been shown to impact on health in two ways. 15 The first is via a reduction in support to address or mitigate the social and corporate determinants of health which worsens health and increases the burden on the healthcare system. The burden of austerity falls more heavily on poorer people and COPD is more common in people in lower income deciles. The second mechanism is a direct healthcare effect where resources to deliver healthcare are limited, in particular ‘time to care’. Particularly concerning is the downward trends observed in the responses to questions which represent the more time intensive aspects of care provision. Although it is possible to improve aspects of COPD care with appropriate targeting and prioritisation, 16–18 COPD and respiratory disease in general have not been afforded the same degree of priority as other aspects of health such as cardiovascular disease. We speculate that the absence of prioritisation and targets could mean that clinicians’ finite attention has inevitably been focused elsewhere.

The inclusion of respiratory disease, finally, as a priority in the NHS England Long Term Plan may mark a turning point, helping to translate the burden of need in respiratory disease into effective policy. 19 The NHS RightCare Pathways ‘aim to provide a set of resources to support systems to concentrate their improvement efforts on where there is greatest opportunity to address variation and improve population health’. 20 These are focused on (i) pulmonary rehabilitation: optimising patient uptake and service provision, (ii) medicines optimisation for inhaler use: staff training programmes for patient inhaler use and (iii) COPD: case finding, accurate and earlier diagnosis.

Methodological issues

This study has some potential limitations. Demographics and disease severity were not collected. However, as the main method of signposting to this resource is by respiratory specialist nurses, respiratory physicians and respiratory support groups such as BLF BreatheEasy, the results likely represent the breadth of demographics and disease severity seen across the NHS. It is unlikely that many people without a formal diagnosis of COPD completed the questions, both because of the way that the survey was signposted and because there is no obvious motivation for large numbers of people without COPD to do so.

Some degree of selection bias is possible as completion requires computer access and literacy. As not all respondents gave their postcode, some duplicate records may remain. Similarly, it is possible that some people completed the questions on more than one occasion. However, given that the tendency to complete the questions multiple times is unlikely to be systematically linked to positive or negative responses, the impact of such limitations are not felt to excessively compromise conclusions.

Clearly, one system driver for better care would be increasing requests by informed patients to receive items of care that they are currently missing out on. Although providing information about patient experience, these data do not allow us to address the effectiveness of the COPD Patient Passport in its proposed role as a tool to inform and motivate patients to overcome barriers to receiving better care. 21

UK patients’ responses to the BLF COPD Patient Passport identify substantial gaps in healthcare delivery. Little evidence exists of improvement over the 5 years reviewed, and these findings should prompt new approaches if the NHS Long Term Plan ambitions to improve respiratory care 19 are to be met.

• National Institute for Clinical Excellence
• Hopkinson NS ,
• Molyneux A ,
• Pink J , et al
• NHS England
• Hurst JMV ,
• Mortier K ,
• Shanahan L ,
• Moussaif M ,
• Adamson A ,
• Roberts CM ,
• Andrew S , et al
• Gimeno-Santos E ,
• Demeyer H , et al
• Nolan J , et al
• Englebretsen C ,
• Cooley N , et al
• Laverty AA ,
• Watt HC , et al
• Hopkinson NS
• Elbehairy AF ,
• Rogers J , et al
• Whittaker H ,
• Connell O ,
• Campbell J , et al
• Bamsey O , et al
• Joshi M , et al
• Stuckler D ,
• Loopstra R , et al
• Kelly JL , et al
• Elkin SL , et al
• Fluxman J , et al
• Russell S ,
• Ogunbayo OJ ,
• Newham JJ , et al

Contributors The authors meet criteria for authorship as recommended by the International Committee of Medical Journal Editors. All the authors played a role in the content and writing of the manuscript. In addition, KP performed the analysis of the data, NSH and KP prepared the first draft, SG helped to develop the original questions for the BLF Patient Passport.

Funding KP was supported by National Institute for Health Research Academic Clinical Fellowship award and the Imperial College Clinician Investigator Scholarship. The funders had no say in the design and conduct of the study; collection, management, analysis and interpretation of the data; preparation, review or approval of the manuscript and decision to submit the manuscript for publication.

Disclaimer This publication presents independent research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Competing interests None declared.

Patient consent for publication Not required.

Ethics approval The present analysis of anonymised data was approved by the British Lung Foundation information governance process. External ethical approval was not deemed necessary.

Provenance and peer review Not commissioned; internally peer reviewed.

Data availability statement No data are available. Data are held by the British Lung Foundation.

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Chronic Obstructive Pulmonary Disease (COPD): best practice guide

This document is for healthcare professionals and patients to show how this condition could be best managed from the unscheduled care perspective.

9. Case Studies

What follows are case studies from three different regions that showcase this best practice through taking a whole system, multi-disciplinary approach to best practice.

Case Study 1

Integrated Care in NHS Lothian – Edinburgh Health and Social Care Partnership

Shifting the Balance from Hospital to Home

The team in Edinburgh have set out to change the way the COPD pathway is delivered, shifting the balance away from care in hospital to care at home. The aim is to support patients to self-manage confidently and safely out of the acute setting, to reduce avoidable ED attendances and admissions, and to future proof against unsustainable increases in demand. It secured short-term Invest to Save funding to drive forward an improvement programme.

Programme Manager for Long-Term Conditions, Edinburgh Health and Social Care Partnership, Amanda Fox explained:

"In 2013, hospital was the default destination for too many COPD patients. Our aim was to create a person-centred Community Respiratory Hub that would provide an alternative and support patients with COPD to stay out of hospital and manage their condition effectively at home. We looked at every aspect of COPD – physical, psychological and social - and devised a holistic multidisciplinary team approach to patient care."

The Crucial Role of Prevention and Supported Self-Management

Respiratory Consultant and COPD Clinical Lead for NHS Lothian, Gourab Choudhury explains how his region is leading the way in COPD care by focusing on prevention and supported-self management:

"The situation for us here in Lothian in relation to COPD care is not uncommon. Currently, over 75s are the highest users of NHS services and that figure is set to rise significantly. COPD represents 20% of all respiratory conditions presenting in hospital and is the most common condition presenting in primary care."

Early Intervention

Education and communication are important if we are to make a difference to the lives of COPD patients. The onset of the disease can be insidious and we estimate that there are high numbers of people who are undiagnosed. It's important to catch the disease early as 20-30% of lung function decline happens in the first phase, and stable and moderate patients can quickly become severe and complex.

Self-Management

"There are some things that patients can do – such as giving up smoking and improving their self-management - to slow the decline and improve their quality of life. The Community Respiratory Team ( CRT ) play a crucial role in supporting people to better understand and effectively self-manage their condition using LiteTouch telehealth and it acts as a first point of contact for people when their health deteriorates."

Reducing Bed Days

"Between 30-50% of acute COPD exacerbations could be treated effectively at home, which was a driver to developing a community-based respiratory hub that integrated primary and secondary care, out of hours and emergency services whilst delivering consistency of care across the city. Since the creation of the new integrated multi-disciplinary team in early 2014, we have succeeded in reducing respiratory bed days by 3000."

Prompt Intervention

"The improvements are not simply about exacerbation management, rather the focus is to adopt a 'whole system' and 'whole person' approach ensuring people at risk of health deterioration are proactively identified and supported earlier in their pathway, ensuring unnecessary admissions are prevented. To achieve this, a new pathway has been developed for patients who are attended by the Scottish Ambulance Service ( SAS ) but who do not need to be conveyed to hospital. As an alternative, SAS refer to the community respiratory team who are committed to responding to the patient within 90 minutes".

Immediate and Early Supported Discharge

"The team recognises that a number of patients will require an admission to support their respiratory deterioration however facilitating early supported discharge is a key role for the community respiratory team who proactively identify inpatients via Boxi reports. The team has established a 'prof-to-prof' telephone support line with the hospital consultant to enable direct and frequent communication for advice and support. There is a percentage of patients who self-present at the ED or are conveyed but an admission is preventable. To support these patients, they have a dedicated team of respiratory nurses who visit ED and the Medical Assessment Unit ( MAU ) three or four times a day to assess if they are stable enough for an immediate discharge into the care of the community respiratory team. This has significantly increased the number of immediate discharges since we began the COPD improvement work.

It is in everyone's interests to discharge COPD patients from hospital as quickly as possible. Aside from saving money and freeing up beds, older patients who remain in hospital can decondition quickly, losing muscle mass and confidence. It might take a week in hospital to bring a patient back up to their baseline, which is frustrating for them and an inefficient use of resources.

Acute and Chronic Condition Management

The CRT responds to acute episodes for COPD patients before handing over to the IMPACT team of district nurses who manage chronic cases. Every COPD patient has an anticipatory care plan which is created by their GP and shared via their Key Information Summary ( KIS ) and can be accessed by those involved in their care including NHS 24, the Scottish Ambulance Service, Lothian Unscheduled Care Service ( LUCS ), and primary and secondary care teams. Additionally, an alert is placed on the patient's record in hospital and community IT system, Trakcare, to highlight that CRT is the first point of contact for care of patients known to their team.

Prior to the integrated service, communication between primary and secondary care was not well established. It was a challenge to deliver the vision of one integrated team across this interface, but this was achieved by running a series of innovation sessions where the wider teams, including external partners, could contribute to a 'share and learn' environment and design the new pathway together. Although the community respiratory team existed before the project they were little known and GP s didn't have the confidence to refer acutely unwell patients at the point of deterioration. Through well planned stakeholder engagement that has completely changed with an increase in GP referrals.

A. Community Respiratory Team - Spreading the Model

"The COPD integrated care model we have developed in Edinburgh has been extremely successful. We far exceeded our bed day reduction target and have been successful in truly integrating teams from primary and secondary care to form one multidisciplinary team with a shared vision of improving patient care: 'wherever and whenever the patient should have the best service'. The person-centred nature of the integrated team ensures a patient's physical, psychological and social needs are met. Currently, the model is being tested within Midlothian where as an ex-mining community, there is a high prevalence of COPD . We believe all parts of Scotland could benefit from a Whole System, Whole Person approach like ours. In each region the particular challenges and circumstances will be different but the key is to have the right team with the right skillset".

What They Did:

1. Community Respiratory Hub: A community based respiratory hub was developed to support people at home during acute exacerbations – preventing unnecessary hospital attendances and to empower patients to self-manage their condition. The aim was to provide the best service to patients wherever and whenever they needed it. The multi-disciplinary hub team includes a dedicated clinical psychologist, integrated care pharmacist and a co-ordinator from the third sector organisation, Grapevine, to provide disability information support to people with COPD that are housebound.

2. COPD Care Bundle Checklist: The team devised a checklist that is used by every team for every COPD patient. Prior to the creation of the checklist, acute staff were assuming certain discussions were taking place with GP s and vice versa. Now, the checklist enables everyone to see what interventions have taken place and when, including advice about quitting smoking, anticipatory care planning and end of life discussions. The checklist remains with the patient's records and is accessible by everyone involved in their care, including out of hours and the ambulance service.

3. Extended Skills and Operating hours: A community respiratory team already existed in Edinburgh prior to the respiratory hub. The new hub brought in additional services and upskilled staff, with training in effective communication for anticipatory care planning and independent prescribing. Operating hours were extended from 8am to 6pm to provide a seamless transition to out of hours services. Uniquely, the community respiratory team have admission rights and are able to admit patients directly to a respiratory ward if necessary, without having to refer them back to their GP . GP s who request a COPD bed are automatically referred to the hub by the Bed Bureau.

4. Psychology Input: Evidence tells us that up to 55% of patients with COPD have anxiety and up to 25% have depression, and they are ten times more likely to experience panic disorder than the general population [7-9] . This can lead to people with COPD calling 999 when they become breathless. These symptoms can be exacerbated by their hyperventilating due to stress rather than being entirely due to the condition. Prior to the project there was no dedicated psychology input to support these individuals so a dedicated COPD clinical psychologist was asked to join the multi-disciplinary hub team to provide support to patients at home, in hospital and in a clinic setting (see below for more info).

5. Pharmacy Support: Many of the patients managed by the Community Respiratory Hub have multimorbidity and are prescribed an average of 15 medications. An integrated care pharmacist reviews the medications for these patients and provides support with administration and compliance.

B. Psychological Services – Support model

Impact of Mental Health

As mentioned on page 18 there is a high prevalence of psychological distress in people with COPD with some evidence that mental health concerns in COPD patients are three times more prevalent than in the rest of the population [10] . In view of this the Lothian team believed that it was essential to address both the physical and mental health of COPD patients if it was to make a lasting impact on admissions and patient experience. Head of Adult Psychology Services for NHS Lothian, Belinda Hacking explained why:

"Anxiety and depression in COPD patients are strong predictors for hospital admission, readmission, increased exacerbations and longer hospital stays. They affect a patient's ability to manage their condition, making them less likely to stick to their treatment plan and more likely to take risks, such as drinking and smoking. This places increased demand on an already over-stretched system. The cost of treating COPD patients who have anxiety and/or depression is twice as much as treating those who don't. In the past there has been too much focus on a patient's physical symptoms and very little consideration of the psychological factors affecting their behaviour. We wanted to address that."

An individual's ability to cope with COPD is due only partly to the severity of their condition. To a large extent, their attitude to the condition and ability to adjust to their change in circumstances is crucial. For these reasons, tackling the psychological challenges of living with COPD was regarded as the missing piece of the jigsaw by the NHS Lothian team.

What They Did

The Psychology Service proposed a three-level approach to managing COPD patients:

1. Providing psychological support to patients with the most complex disorders.

2. Assessing the most frequent hospital attenders to understand in more detail the reasons for their hospital visits. The need for this was highlighted by the case of one individual whose COPD was relatively mild but whose high anxiety levels had prompted one hospital visit after another, seeking reassurance. The review found that only 40% of those patients reviewed had a pressing medical need to go to hospital. The remaining 60% needed varying degrees of psychological support.

3. Reviewing Key Information Summaries and feeding into case conferences and discharge planning meetings. Highlighting the psychological needs and psychosocial context of each individual ensured holistic patient-centred management plans were created to help people to cope better at home.

Programme Manager for Long-Term Conditions, Edinburgh Health and Social Care Partnership, Amanda Fox created a checklist to identify COPD patients who may benefit from referral to the psychology team. This included all frequent attenders.

Of those patients referred to the clinical psychology service in Edinburgh, 63% had clinically significant anxiety and 38% had clinically significant depression. Before psychological intervention, 28% of patients had 'severe' anxiety symptoms and 36% had 'moderate' symptoms. Following psychological intervention 89% of participants' scores fell within the 'normal' range. It was a similar pattern for depression, with 12% of patients initially having 'severe' symptoms and 27% 'moderate'. After working with the psychology service, 82% of scores fell within the 'normal' range. A clinically significant improvement was seen in the overall quality of life in those people with COPD who completed a psychological intervention. Patients reported less shortness of breath, less tiredness, and increased confidence in their ability to cope with their COPD symptoms following psychological input.

One patient with COPD explained that psychological intervention helped her to understand that anxiety and panic played a part in her breathlessness and admissions to hospital. Introducing new coping skills helped her to manage her panic more effectively:

"Before my COPD got worse, when I had an episode, I would get panicked and go to the hospital, but now I can manage that panic better and manage to stay at home most of the time, which is where you want to be."

There are many reasons why COPD patients experience high levels of anxiety and depression as Dr Grainne O'Brien, Clinical Psychologist, explained:

"People with COPD often experience anxiety – being breathless can be very scary and can cause someone to hyperventilate, thereby adding to the sensation of breathlessness. This symptom of breathlessness is experienced alongside other challenges of living with a long-term condition including other physical symptoms such as fatigue, limited mobility and increased dependence upon family and carers, People with COPD can lose touch with their social networks and have to stop certain hobbies which can be very isolating. These changes can result in increased anxiety, a loss of confidence and lowered mood.

"If we really want to make a difference to the lives of people with COPD , why would we not address their mental, as well as their physical health?"

As well as tackling some of the causes behind a patient's anxiety or depression, the psychology team were also able to support people to become more engaged in their treatment. "It is about understanding what matters to them," added Grainne, "so we can help them to understand the relevance of their treatment to achieving their personal goals and best quality of life. This is a very enabling way of working with COPD patients and it proved very effective."

The Psychology Team also plays a key role in helping patients and their families to adjust to their new circumstances, particularly as they approach the palliative stage of their illness. For some patients the prescription of long-term oxygen therapy at home can represent a significant deterioration in their condition. Psychological intervention can help somebody to adjust to the change in their illness as demonstrated by the below quote from a specialist respiratory nurse in relation to a particular case.

"When Mrs X was required to have Long Term Oxygen Therapy, this became a major hurdle for her to come to terms with. With the help of psychology she was able to overcome this and is now well established at home with oxygen. I feel that if she had not had any input from psychology then she would have required more admissions to hospital due to anxiety and an inability to cope rather than actually due to being medically unwell." - (Specialist Respiratory Nurse).

As clinical psychology was a new service within COPD care in Edinburgh, an initial challenge was to link the new service into the various existing COPD services and demonstrate the various roles a psychologist could play within the team. Time was spent embedding psychology within the wider integrated care team and ensuring accessibility and responsive service provision by locating the service across multiple bases (across community and acute settings), attending regular MDT meetings and providing alternative psychological viewpoints into patient careplans.

C. Principles of the overall approach

1. Collaboration and Co-location: Co-locating the Psychologist, Pharmacist and third sector co-ordinator with the Community Respiratory Hub helped to create a sense of shared vision and purpose. Regular conversations took place between acute colleagues and the Psychology Team to encourage different perspectives on the reasons that patients were presenting for treatment. It was about everyone collaborating and playing to their strengths. Belinda said: "Sometimes colleagues would say "I know there is something else going on here but I don't have the skills to deal with it". Clinicians are very time-limited and when they are trying to work outside their speciality it can take too long. They welcomed being able to refer people to us for further assessment".

2. A Holistic View of Patients: Considering both the physical and psychological factors at play enabled the team to gain a really clear understanding of patients and how best to help them. Once they understood the actual issues it was far easier for the team to address them. For example, one patient who regularly called for an ambulance was found to be suffering from depression and loneliness. She was given the number of a 24-hour telephone helpline for older people and the frequency of her admissions has dropped dramatically.

3. Innovation: There was a great deal of enthusiasm and willingness to try new approaches amongst the stakeholders including SAS , community and acute-based respiratory teams. The innovation sessions provided a platform for the different disciplines to learn from each other and share their ideas and support a collaborative approach to developing the new pathways.

4. Support to Staff: Not only does the Psychology Team support patients but it also provides psychological advice, training consultation to staff. For example, the team has held training sessions for senior physiotherapists to enable them to have difficult Do Not Resuscitate conversations with patients. The Prof-to-Prof support line is in place to provide direct communication between the Community Respiratory Hub and the hospital consultant for advice which can be decision to admit or general support.

5. Liaising with the Ambulance Service: The team worked collaboratively with the SAS to develop new COPD pathways providing an alternative to hospital admission. The Community Respiratory Hub will respond to SAS referrals within 90 minutes. Out of hours, SAS can request an urgent visit from a Lothian Unscheduled Care Service GP . Overnight information of these referrals are passed to CRT to follow up, ensuring there is consistency of care.

6. Supported Self Management: Patients are supported to self-manage their condition at home using LiteTouch telehealth. An in-depth assessment establishes their normal levels and they regularly monitor for changes. If changes are noted, patients have a proactive plan of self-care, including use of nebulizer or certain medications, anxiety management strategies such as breathing exercises, along with CRT contact details if symptoms worsen. Rather than being the default, calling an ambulance only becomes necessary when other routes have been tried.

7. Medication Reviews: An Integrated Care pharmacist conducts medication reviews, ensuring that patients are taking the right medication in the right dose at the right time and offering them the opportunity to ask questions. Often the pharmacist will visit patients at home jointly with the CRT to ensure the medication regime is understood.

8. Frequent Attender Database: COPD patients who have had two or more hospital admissions within 12 months are added to the frequent attender database. These patients are reviewed at the regular multidisciplinary team meetings. The team can see the patients' admission patterns and check what types of support services are in place. Using a care bundle checklist to consider all options, the multi-disciplinary team agree a plan of care which is shared with the patient's GP . A member of the team visits the patients to discuss the plan and GP s are asked to create a KIS with action points for review at the next meeting,

9. Multidisciplinary Team Meetings: Full multidisciplinary team meetings are held fortnightly at the Royal Infirmary and monthly at the Western General in Edinburgh. They take the form of a virtual clinic and include members of the extended team, including: respiratory consultants, community respiratory physiotherapists, respiratory nurse specialists, IMPACT nurses, psychologist, pharmacist, PACT doctors, GP s, the ambulatory service and pulmonary rehab. The care bundle checklist prompts discussion and case review for frequent attenders and other patients highlighted at being at risk by the team.

10. Branding and marketing: The project manager developed a brand for the Community Respiratory Hub using the strapline "Think COPD , think CRT ". Fridge magnets and mousemats are available to drive home its message to patients and healthcare professionals alike. Every GP practice in Edinburgh was sent mousemats and regular newsletters to raise awareness of the newly formed service and the support available. In the run-up to public holidays, the team holds a marketing campaign to remind referrers to use the hub rather than sending COPD patients to the ED . The 'Think COPD , Think CRT ' strapline has been added to every frequent attender KIS to prompt referrals at point of deterioration.

• Primary care, secondary care, social care and the ambulance service were all accustomed to working in silos. There was no joined up approach to COPD and no alternative pathways to acute care. Innovation sessions helped to break down these barriers and support teams to better understand each other's roles and facilitate integrated working.
• The COPD project only covers the Edinburgh area. There were some challenges for the SAS as their boundaries were different and they could only refer Edinburgh patients to the service. The team responded by producing easy-reference pocket guides for ambulance crews.
• There was no ring-fenced training time for SAS staff so any training they attended was unpaid. The team created a series of accessible online video clips that staff could watch without having to take time off work.

The project was evaluated by Lothian Analytical Services between April 2013 and September 2015. The target was to reduce respiratory bed days by 206. The team achieved a reduction of 1,418.

Since that time, bed days have continued to fall. The figure now stands at 2,954. There has also been a 7% reduction in length of stay of 48 hours or less.

There have been 252 multidisciplinary team reviews of frequent attenders and 74% had a new KIS as a result.

10% of all COPD requests to the bed bureau have been rerouted to the Community Respiratory Hub. There has been a 23% increase in referrals to the Community Respiratory Team. 37% of patients referred to the team have avoided a hospital admission.

Pharmacy has conducted 239 medication reviews helping to target non-compliance.

The project has achieved several accolades including a Scottish Health award: Care for Long Term Illness and poster awards at the National Respiratory Managed Clinical Network learning event and Institute of Healthcare Management ( IHM ) conference. The programme manager, Amanda Fox, was awarded Scotland's Top Healthcare Manager runner up by the Institute of Healthcare Management.

WHAT MADE THE EDINBURGH PROJECT SO SUCCESSFUL

A View from the Frontline

Laura Groom is Team Lead for the Community Respiratory Team in Edinburgh and Advanced Physiotherapy Practitioner. She joined the service in 2008 and has gained a detailed insight into the factors that contribute to its success.

Plugging the Gaps

Laura explained:

"We recognised in Edinburgh that there were significant unmet needs in the care of COPD patients. For example, we realised that:

• we might not be capturing all of the patients who could be successfully treated at home
• COPD patients are at high risk of anxiety and depression
• patients might need support with other aspects of their life besides their physical wellbeing
• options for acutely ill patients were limited. They tended to call 999

COPD management is typically fairly standardised. This project set out to identify gaps in the service and plug them wherever possible."

GP Engagement

Members of the CRT visited GP s to discuss the type of support they might need for COPD patients, including mental health provision and prescribing. The team held GP events, both to hear from GP s about their experience of caring for COPD patients and to introduce them to the services offered by the Community Respiratory Team. They also talked at GP forums. Laura commented:

"A key piece of learning for us was to create different presentations for different audiences so you can really target your message. The presentation we gave to GP s, for example, was different to the presentation we gave to colleagues in social care."

GP s have been enthusiastic about the new service. Day-to-day care of COPD patients is provided by the Community Respiratory Team with GP s being kept informed.

A Holistic Perspective

COPD is a risk factor for low mood and anxiety. Laura said:

"Breathlessness, infections and regular hospital admissions are characteristics of COPD . Ongoing poor health and a decline in function can bring people down, making them prone to depression. At the same time, the sensation of breathlessness can lead to rising anxiety, which may contribute to the breathlessness. A patient's mental health, along with factors such as poor living conditions and financial difficulties all contribute to their overall health and wellbeing. One of the major success factors for our work in Edinburgh is the fact that we consider the patient in their entirety, not their physical health alone."

Integrated Model of Care

One of the factors that contributed to true multidisciplinary working in Edinburgh was the fact that services are co-located, making it easier to provide an integrated model of care. This gives clinicians a good understanding of each other's roles and challenges. Some of the services, such as psychology and pharmacy, are co-located for one day a week. The full team meets monthly at the Western General Hospital and weekly at the Royal Infirmary. Patients who are unwell are discussed at these multidisciplinary team meetings.

The team also holds regular shadowing sessions so the clinicians can experience their colleagues' day-to-day reality. The benefits of this, in terms of insights and relationship-building, make it a very worthwhile investment of time and resources. The Community Respiratory Team has successfully built a bridge between primary and secondary care.

Data to Inform Services

The team has used data effectively to identify frequent attenders. This enables them to target COPD patients who need their support the most, thereby allowing them to make the biggest difference. At each multidisciplinary team meeting, the team reviews the latest data on patient referrals and admissions, making decisions based on real-time information.

Clinical Leadership

Strong clinical leadership played a key role both in getting the project underway and in unsticking possible challenges. The team found it particularly helpful for one clinician to be able to speak to another about the most appropriate care of a patient.

Innovation Sessions

At the start of the project, the team held Innovation Sessions to give everybody the opportunity to share their thoughts on what good COPD care looks like. This helped to achieve a good cross-fertilisation of ideas and also assisted with engaging stakeholders in the work taking place and the reasons behind it.

An Alternative to Admission for the Ambulance Service

Paramedics have welcomed the new Community Respiratory Team as it provides a viable alternative to hospital admissions for COPD patients experiencing an exacerbation in their symptoms. Now ambulance teams can confidently refer patients to a community-based service rather than automatically admitting them.

Self-Referral by Patients

"I feel very strongly about this," said Laura. "In the past there has been a perception that allowing patients to self-refer would open the floodgates. Clinicians believed that patients were on a downward trajectory and it was pointless to discharge them when it was likely that they would have to come back into hospital. Actually, we have found that giving them the right level of education and confidence in the service and providing telehealth has enabled us to manage self-referrals effectively. There has undoubtedly been an increase in telephone triage but this is the right thing to do for patients. It is good for us to build an ongoing relationship with them rather than having to start from scratch with them when they become unwell."

The Right Model of Care

Laura believes that the model of care for COPD developed in Edinburgh could be scaled across NHS Scotland. "This is the right model of care for COPD patients and is very transferable, if not in its entirety then in part. We have invested a huge amount of time in developing this process. It would be great if other Health Boards could benefit from this and improve their services for this group of patients who are often overlooked.

Case Study 2

Hospital at Home Keeps COPD Patients out of Hospital

NHS Lanarkshire

The 2020 Vision sets out the government's aspiration for people to live longer, healthier lives, supported to be at home rather than in a hospital setting wherever possible. In this vision, hospital becomes the place of choice only after all other resources have been exhausted. COPD patients in Lanarkshire are treated on a virtual ward rather than being admitted to hospital, helping to reduce the risk of deconditioning and hospital-acquired infections.

National Clinical Lead for Older People and Frailty, Dr Graham Ellis explained:

"Hospital at Home provides a genuine alternative to admission, taking multidisciplinary care into the patient's own home thereby avoiding the disruption and potential harm of an admission. Crucially, there is no difference between the diagnostics provided in hospitals and the diagnostics that we can provide in the patient's own home."

Since the service was launched in 2012, any GP that contacts the bed bureau requesting admission for a COPD patient is automatically referred to Hospital at Home. Patients are seen by a geriatrician or COPD specialist within an hour of referral and consultants create an individual care plan. Only those patients with a genuine clinical need are admitted to hospital.

Virtual Ward Round

Hospital at Home employs a team of 38 WTE (whole time equivalent) therapists, consultants, nurses, physiotherapists, OT s, ambulance staff and support workers. The team holds a daily virtual ward round to assess all patients under its care. Staff visit patients in their own home to carry out all of the tests that would normally be done in hospital, including blood tests and X-rays. They can also carry out clinical reviews and prescribe or amend medication plans.

A Genuine Alternative to Admission

Graham said:

"The service succeeds in keeping 75% of COPD patients in their own homes. We have an average length of stay of four or five days and our readmission and mortality rates are on a par with the acute hospital. We are working with some of the region's most unwell patients, many of whom have multiple pathologies including COPD . It is important to keep them out of hospital wherever possible as they are highly susceptible to hospital-acquired infection, falls and deconditioning."

Pioneering and Cost-Effective

Hospital at Home in Lanarkshire was the first of its kind in Scotland and has inspired the creation of similar services in Lothian and Fife. The service also attracted the praise of The Scottish Government's Director of Health and Social Care, Derek Feeley.

Allied Health Professional Rehabilitation Consultant in Older People and Lanarkshire Hospital at Home Lead, Claire Ritchie commented:

"When the service began we found we were using far fewer resources than we anticipated – just a third of our total budget. We identified a number of reasons for this. Older people are far more resilient when they remain in their own homes. They remain mobile and cognitively more aware. Often they have family or friends to support them. Hospital at Home gives them rapid access to skilled geriatricians who can create a tailored treatment plan and review their medications. On occasions we have been able to reduce significantly the amount of drugs people are taking."

Meeting Demand at Lower Cost

Since 2015, Hospital at Home has managed 1,751 patients in their own home. It has cut ambulance service costs by £464,000 and reduced A&E admissions by 24%. In addition to seeing patients referred by GP s, the service now manages step-down patients from acute wards. Patient satisfaction levels are high. Prescribing costs are also significantly lower than in hospital.

Graham concluded:

"We believe that virtual wards will enable us to meet growing demand for COPD services over the next 10 years. Forecasters predict that, based on the current trajectory, we would need an additional 440 beds to meet rising rates of the condition. This is clearly unsustainable and Hospital at Home is proving to be a genuine alternative to an exponential rise in hospital admissions."

1. Resistance to Change: As with any new service there was a certain amount of resistance to change and uncertainty at first. The Hospital at Home team met up with GP s and acute consultants to answer questions and allay fears. Bringing together different cultures and teams into one also proved challenging.

"We worked with a coalition of the willing at first," explained Claire. "Once we began to collect evidence of the impact we were making it became easier to engage people."

2. Rapid Diagnostics: For the new service to work, it was important for it the team to have rapid access to diagnostics and for lab results to be processed as quickly as they would be for inpatients. The Hospital at Home team worked hard to engage colleagues in diagnostics and explain the new service.

3. Building the Right Skills Mix: Hospital at Home needs a blended mix of skills. It took time to recruit and train staff in the correct skills mix. The team developed a set of competency-based assessments and used the Aston Model to build a cohesive team culture.

Case Study 3

Small Changes Make a Big Difference in NHS Greater Glasgow and Clyde

Small things can make a big difference to the quality of life of patients with COPD , according to Dave Anderson, Clinical Lead for the Community Respiratory Team and Pulmonary Rehab in NHS Greater Glasgow and Clyde. If you live in Glasgow, you are 45% more likely to have COPD than any other part of Scotland where it accounts for 45,000 emergency bed days costing £9.5 million to the health board annually.

The region launched a pilot project to reduce COPD admissions and improve quality of life for patients in Glasgow. A Community Respiratory Team provides home-based care for COPD patients and a hospital-based Pulmonary Rehabilitation Team deliver patient education and support with mobilisation and exercise capacity.

Dave explained:

"There are 120,000 people with COPD in Scotland. The condition is responsible for around 4,500 deaths per year - one of the most common causes of death in Scotland. Nationally there is a lack of recognition of the condition and an almost constant pressure to reduce services.

"Coupled with this is a lack of funding for services, and it can be challenging to get COPD patients to engage with support services. Their expectations tend to be low and it can be hard to get them to recognise the impact that even small changes could have on their life. But, just because it is challenging, that is not a reason to accept the status quo. People with COPD often come from poorer backgrounds. It is a disease associated with smoking and it is easy to overlook these patients because of that. But this is a growing challenge for all of us and I feel strongly that these patients deserve better. This is happening on our doorstep, right now, and we owe it to people with COPD to do what we can to make things better."

Community Respiratory Team Working Towards a Patient's Own Goals

Making things better means keeping patients out of hospital wherever possible and supporting them to make changes in their lives. Dave explained:

"We encourage patients to set their own goals. They might want to be able to go out to the shops or to Bingo, for example. The Community Respiratory Team works with them to help them achieve whatever it is they want to achieve, however small. People's quality of life can improve significantly by achieving even marginal improvements in mobility. There is no wonder drug that can cure COPD but there are things that can be done to ensure that patients are receiving the best treatment for their condition, including support to stop smoking or to walk more."

Community Respiratory Team

The Community Respiratory Team serves Glasgow City Health and Social Care Partnership and is located in Possilpark Glasgow, in one of Scotland's most deprived areas. The team has twenty members and consists of physiotherapists, respiratory nurse specialists, occupational therapists, pharmacists, dieticians and support workers. The service covers the whole of Glasgow City HSCP , a population of 596,550.

The Community Respiratory Team was created following a five-year project in primary care. During this time three separate projects were piloted and evaluated and the team implemented some of the most successful components of each. These include having respiratory nurses located within the community and adding in a specialist dietician into the team.

The focus of the Community Respiratory Team is avoidance of hospital admissions. As Marianne Milligan, Team Leader of the Community Respiratory Team explains:

"If you live in Glasgow, you are more likely to have Chronic Obstructive Pulmonary Disease ( COPD ) than any other part of Scotland and the condition accounts for 45,000 emergency bed days costing £9.5 million to the health board annually which is the highest nationally. A specialist multidisciplinary team placed in the community to support people having exacerbations of COPD was previously not in existence; people had to be admitted to hospital to receive this support. Piloted initially in one sector of the city, the service proved that it could provide safe and quality person-centred care that produced significant cost savings. With Scottish Integration Care Fund we could expand to city wide and now have secured permanent funding for this service. Scottish Government drivers are to transfer the balance of care into the community and enabling self-management, this is what our service can deliver. In my experience people want to stay in their own homes if there is a safe and effective alternative and wish to avoid a hospital admission as much as possible".

The team provides a reactive service to people suffering exacerbations. GP s utilise it as an alternative to patients going into hospital by accessing the specialist service and supporting the patient in their own home. 92% of acutely unwell patients at risk of hospital admission are seen the same working day and there has been an 83% reduction in anticipated hospital admissions as a result.

The service also facilitates early discharge from hospital by closely linking with secondary care colleagues and providing responsive follow up and support. The ethos of the service is to provide a personalised approach to care, enabling self-management by the patients which includes: increasing their own knowledge of their condition and especially what to do when they are unwell; improving knowledge of inhaled therapies; knowing how to clear their chest and also increasing their physical activity and independence through the provision of home pulmonary rehabilitation and equipment. In addition, malnutrition, mental health issues of anxiety and depression, and complex polypharmacy/ comorbidities that are commonly seen in end stage COPD are addressed through the coordinated, multidisciplinary approach.

COPD patients are frequently living in areas of deprivation. Glasgow City contains 3 in 10 of the 15% most deprived data zones in Scotland, which is the highest proportion for a local authority. Deprivation in patients with COPD is a significant predictor of the frequency and duration of hospital admissions, resulting in increased rates and longer lengths of stay especially during the winter. It is also linked to reduced secondary care outpatient attendance. More than 60% of patients that are supported by the Community Respiratory Team live in the most deprived areas of Scotland (Scottish Index of Multiple Deprivation), this figure rising to 74% when analysing the North East of the city.

The team supports patients with end stage COPD with a myriad of co-morbidities living with significant levels of complex physical, mental and social issues. The ethos of this multidisciplinary service surrounds the collaborative effort between the patient and the clinician. Delivering person-centred SMART goal setting and working towards a personalised outcome approach increases participation and engagement. The multidisciplinary service is then coordinated to meet the needs of the patient and their goal. Over 80% of patients decide and agree on their own individualised and meaningful goals. Patients score their own progress at the end of the intervention as a measure of their own success.

Example of a goal may be:

• "To feel more confident with my breathlessness and have fewer panic attacks when out walking to my local shop every day so I can have my independence back".

The team signposts to other agencies e.g. in the third sector and utilises community services such as befriending, hospice or services such as Community Connectors to reduce social isolation in this client group. The most common referrals, in order of frequency are: financial inclusion, social care direct, hospice and pulmonary rehabilitation.

Reduced impact of disease and improved quality of life has been demonstrated through validated outcome measures of patients who are supported by the Community Respiratory Team. Statistically significant increases in both the COPD Assessment Test ( CAT ) and EQ5DL Quality of Life measures are shown. Significant average improvements of CAT score pre- and post-input have been delivered. This figure was a substantial 5, with the authors of the assessment noting 2 as being clinically significant. Likewise sizeable average increases of 13% in a patient's quality of life are shown.

Virtual Ward Rounds

Development of interface joint working through a "virtual MDT ", led by the consultant respiratory physician, allows clinicians in the Community Respiratory Team to discuss current patients on their caseloads facilitating secondary assessment, opinion and input. For example, this could include: addition and optimisation of medication, organisation of investigations and review of chest X-rays/ CT s, decisions for clinic reviews plus educational sessions. This streamlines the referral process for this patient group for secondary referral. The weekly treatment plan of 10 – 12 complex patients are discussed as a team with the plans and outcomes being communicated on Clinical portal but also directly with the GP .

The service has been warmly welcomed by GP s, who are the largest referral group into the service. The team has had a positive impact on primary care by freeing up GP time. 75% of 70 GP s surveyed reported a reduction in the number of home visits and 63% reported that patients were able to self-manage their condition more effectively with 60% specifically being around optimisation and use of inhaled therapies. 85% of GP s rated the service as good or very good. Ongoing engagement sessions with GP continually increase awareness and use of the service.

The service aims to be easily accessible to people with COPD in Glasgow as Marianne Milligan explains:

"We support patients in their home making sure they have an appropriate level of input and care to safely and effectively help them recover. We then look at how we can help them to optimise their own health, what they can do to help their symptoms, particularly of breathlessness, and ensure they have an understanding of their condition so they know how to control their own health. They often have a lack of confidence in how active they can be as breathlessness leads to feelings of anxiety and results in inactivity. By providing them with a rounded approach with all members of the team working towards the patient's goal we support people to be as active and engaged in their surroundings and community as much as possible and their quality of life is massively enhanced as a result. Once they have achieved their goal, we discharge them, however patients can then self-refer into our service when they are becoming unwell. This can greatly relieve any anxiety as they know our team, they know who to call and we can see them that day if required. There are continual increases in patients self-referring into the service and patients are no longer waiting to become so unwell that they need a hospital admission and instead contacting us earlier in their exacerbation. All these factors are leading to a trend of reductions in hospital admissions being shown in Glasgow".

Over 90% of patients supported by the service are graded on the MRC Breathlessness Score as being 4 or 5 (grade 5 being they are breathless when getting dressed). A significant proportion of COPD patients are entering the final stages of their life and the Community Respiratory Team also works with them to create anticipatory and end of life plans.

Combined Respiratory Services

Establishing patient pathways between the combined Glasgow Respiratory services of the Community Respiratory Team, Pulmonary Rehabilitation classes and Hospital-based Respiratory Nursing Teams have considerably improved service delivery ensuring the patient is seeing the right person at the right time.

Investing in training has led to Advanced Practitioner qualification by the majority of clinicians who work with acutely unwell patients.

£1m Savings

The pilot project delivered net savings of more than £1 million a year and avoids, on average, 45 admissions a month. Patient quality of life has improved and GP s are fully onboard with the service. NHS Greater Glasgow and Clyde has now provided full funding for the COPD service and believes there is potential to scale the project to the NHS Greater Glasgow and Clyde area and to apply similar approaches to other long-term conditions. Additional future plans include: increasing to a seven day service, improving links with Scottish Ambulance Service, and increasing presence of health professionals in the Emergency Department to improve the turnaround of patients at the front door towards community support.

The team's success has been recognised and includes best COPD abstract selection in European Respiratory Society Conference, a Scottish Pharmacy Award, a Scottish Respiratory MCN award and a Health Improvement Scotland Research award

http://www.scottishpharmacist.co.uk/2016/09/30/scottish-pharmacist-awards-201516-winners/

http://www.healthcareimprovementscotland.org/news_and_events/events/5th_annual_research_symposium.aspx

Email: Syed Kerbalai

Phone: 0300 244 4000 – Central Enquiry Unit

The Scottish Government St Andrew's House Regent Road Edinburgh EH1 3DG

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• Burden of chronic...

Burden of chronic obstructive pulmonary disease and its attributable risk factors in 204 countries and territories, 1990-2019: results from the Global Burden of Disease Study 2019

• Related content
• Peer review
• Saeid Safiri , assistant professor 1 2 3 ,
• Kristin Carson-Chahhoud , associate professor 4 5 ,
• Maryam Noori , medical student 6 ,
• Seyed Aria Nejadghaderi , medical student 7 8 ,
• Mark J M Sullman , professor 9 10 ,
• Javad Ahmadian Heris , assistant professor 11 ,
• Khalil Ansarin , professor 12 ,
• Mohammad Ali Mansournia , professor 13 ,
• Gary S Collins , professor 14 15 ,
• Ali-Asghar Kolahi , associate professor 16 ,
• Jay S Kaufman , professor 17
• 1 Tuberculosis and Lung Diseases Research Centre, Tabriz University of Medical Sciences, Tabriz, Iran
• 2 Department of Community Medicine, Faculty of Medicine, Tabriz University of Medical Sciences, Tabriz, Iran
• 3 Department of Epidemiology and Biostatistics, Faculty of Health, Tabriz University of Medical Sciences, Tabriz, Iran
• 4 Australian Centre for Precision Health, University of South Australia, South Australia, Australia
• 5 School of Medicine, University of Adelaide, South Australia, Australia
• 6 Student Research Committee, School of Medicine, Iran University of Medical Sciences, Tehran, Iran
• 7 Research Centre for Integrative Medicine in Aging, Aging Research Institute, Tabriz University of Medical Sciences, Tabriz, Iran
• 8 Systematic Review and Meta-analysis Expert Group (SRMEG), Universal Scientific Education and Research Network (USERN), Tehran, Iran
• 9 Department of Life and Health Sciences, University of Nicosia, Nicosia, Cyprus
• 10 Department of Social Sciences, University of Nicosia, Nicosia, Cyprus
• 11 Department of Allergy and Clinical Immunology, Paediatric Hospital, Tabriz University of Medical Sciences, Tabriz, Iran
• 12 Rahat Breath and Sleep Research Centre, Tabriz University of Medical Sciences, Tabriz, Iran
• 13 Department of Epidemiology and Biostatistics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran
• 14 Centre for Statistics in Medicine, NDORMS, Botnar Research Centre, University of Oxford, Oxford, UK
• 15 NIHR Oxford Biomedical Research Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, UK
• 16 Social Determinants of Health Research Centre, Shahid Beheshti University of Medical Sciences, Tehran, Iran
• 17 Department of Epidemiology, Biostatistics, and Occupational Health, Faculty of Medicine, McGill University, Montreal, Quebec, Canada
• Correspondence to: A-A Kolahi a.kolahi{at}sbmu.ac.ir
• Accepted 23 May 2022

Objective To report the global, regional, and national burden of chronic obstructive pulmonary disease (COPD) and its attributable risk factors between 1990 and 2019, by age, sex, and sociodemographic index.

Design Systematic analysis.

Data source Global Burden of Disease Study 2019.

Main outcome measures Data on the prevalence, deaths, and disability adjusted life years (DALYs) of COPD, and its attributable risk factors, were retrieved from the Global Burden of Disease 2019 project for 204 countries and territories, between 1990 and 2019. The counts and rates per 100 000 population, along with 95% uncertainty intervals, were presented for each estimate.

Results In 2019, 212.3 million prevalent cases of COPD were reported globally, with COPD accounting for 3.3 million deaths and 74.4 million DALYs. The global age standardised point prevalence, death, and DALY rates for COPD were 2638.2 (95% uncertainty intervals 2492.2 to 2796.1), 42.5 (37.6 to 46.3), and 926.1 (848.8 to 997.7) per 100 000 population, which were 8.7%, 41.7%, and 39.8% lower than in 1990, respectively. In 2019, Denmark (4299.5), Myanmar (3963.7), and Belgium (3927.7) had the highest age standardised point prevalence of COPD. Egypt (62.0%), Georgia (54.9%), and Nicaragua (51.6%) showed the largest increases in age standardised point prevalence across the study period. In 2019, Nepal (182.5) and Japan (7.4) had the highest and lowest age standardised death rates per 100 000, respectively, and Nepal (3318.4) and Barbados (177.7) had the highest and lowest age standardised DALY rates per 100 000, respectively. In men, the global DALY rate of COPD increased up to age 85-89 years and then decreased with advancing age, whereas for women the rate increased up to the oldest age group (≥95 years). Regionally, an overall reversed V shaped association was found between sociodemographic index and the age standardised DALY rate of COPD. Factors contributing most to the DALYs rates for COPD were smoking (46.0%), pollution from ambient particulate matter (20.7%), and occupational exposure to particulate matter, gases, and fumes (15.6%).

Conclusions Despite the decreasing burden of COPD, this disease remains a major public health problem, especially in countries with a low sociodemographic index. Preventive programmes should focus on smoking cessation, improving air quality, and reducing occupational exposures to further reduce the burden of COPD.

Introduction

Chronic obstructive pulmonary disease (COPD) is a common chronic respiratory condition resulting in gradual deterioration and worsening of symptoms. Although preventable, once established it cannot be cured, but effective self-management strategies can lessen the burden of disease and improve quality of life. 1 In 1990, COPD was the second most common cause of death (in terms of age standardised death rate) across the world and in 2019 COPD was the third most common cause of death. 2 From 2007 to 2017, an increase of 15.6% in the prevalence of COPD was reported, although the age standardised prevalence decreased by 10.1% in men. 3 COPD is considered a systemic disease and is more common in individuals with a history of tobacco smoking. 4 5 A wide range of comorbidities and risk factors are associated with the disease, including genetics, smoking, infections, malnutrition, ageing, occupational exposures, indoor and outdoor air pollutants, asthma, and low socioeconomic status. 4 6 Together, these factors could lead to vascular abnormalities, such as loss of alveolar capillary endothelial cells, destruction of alveolar cells, and alveolar space enlargement, which are important contributors in the progression of COPD. 6 Clinical manifestations of COPD, such as dyspnoea, cough, wheezing, and phlegm, are more severe in the early morning and evening, negatively affecting the patient’s quality of life. 7 The prognosis of COPD is determined by measuring forced expiratory volume in one second, a measure of airflow. 8 Moreover, COPD can affect the prognosis of other diseases, such as covid-19, 9 cancer, mental health conditions, cardiovascular diseases, gastrointestinal disorders, and musculoskeletal disorders. 10

Several major international collaborations have provided data on COPD. For example, the Global Initiative for Chronic Obstructive Lung Disease (GOLD) programme was established in 1998 and provides regular updates and evidence based recommendations for the management of COPD. 11 The European Community Respiratory Health Survey was established in 1990 in response to the increased prevalence of asthma in the 1980s, with the aim of determining the distribution of asthma and its healthcare burden in the European community. 12 In the last iteration of the European Community Respiratory Health Survey (European Community Respiratory Health Survey III), the effects of atopic status and asthma on the development of COPD were evaluated. 13 Based on the GOLD criteria, a diagnosis of COPD is suspected if the patient presents with related symptoms (eg, chronic cough, sputum, and shortness of breath) and risk factors (eg, tobacco smoking and occupational exposures) but is confirmed by the presence of a post-bronchodilator forced expiratory volume in one second/forced vital capacity value of <0.7. 11 Commonly used drug treatments for COPD are β agonists, anticholinergic agents, and corticosteroids, and other options include α-1 antitrypsin augmentation therapy, antitussive agents, and vasodilators. 11

Previous systematic reviews on the epidemiology of COPD have reported a global prevalence ranging from 7.6% in 2004 to 11.4% in 2014. 14 15 The prevalence of COPD has been reported to be higher in men, in urban areas, and in high income countries. 14 Also, COPD imposes a substantial economic burden, ranging from €1963 (£1685; $2068) in Belgium to €10 701 in Norway annually, and the cost is positively correlated with a late diagnosis, severe COPD, a greater number of exacerbations, and hospital admissions. 16

Current evidence on the epidemiology of COPD has not used a modelling approach to estimate the burden of COPD, but instead used systematic reviews to provide a pooled estimation of the prevalence of COPD. 14 15 Several analytical epidemiological studies have reported prevalence and incidence data for many sites worldwide, including whole countries, with standardised diagnostic criteria, and these provide real prevalence data. 17 18 19 20 The most recent study based on the Global Burden of Disease 2017 data reported the prevalence and burden of chronic respiratory diseases, such as COPD and asthma combined, and did not report the disease specific burden; these estimates need updating. 5 Moreover, based on the Global Burden of Disease 2017 data, the trends and risk factors for mortality and disability adjusted life years (DALYs) due to COPD have been published, but the prevalent numbers and rates have not been reported. 21 Updated information on the burden of important chronic respiratory diseases is needed for public health and advocacy purposes.

Recently, data from the Global Burden of Disease 2019 study were used to report the burden of COPD attributable to one specific risk factor (that is, ambient PM2.5), but the overall burden of COPD and the burden attributable to other risk factors were not estimated. 22 Here, we report the prevalence, deaths, and DALYs associated with COPD, and the attributable risk factors by age, sex, and sociodemographic index in 204 countries and territories from 1990 to 2019.

The Global Burden of Disease 2019 study estimated the burden of 369 diseases and injuries and 87 risk factors from 1990 to 2019 in 204 countries and territories and 21 regions. 2 Detailed descriptions of the methodologies have been reported, 2 23 24 and fatal and non-fatal estimates have been published ( https://vizhub.healthdata.org/gbd-compare/ and https://ghdx.healthdata.org/gbd-results-tool ).

Case definition and data sources

The GOLD definition of COPD was used in this study: a value of <0.7 for forced expiratory volume in one second/forced vital capacity (one second of forceful exhalation/total forced expiration) with spirometry, after bronchodilation. The definitions that we used for the severity of COPD also followed the GOLD criteria: class I=mild, ≥80% of normal; class II=moderate, 50-79% of normal; classes III and IV=severe, <50% of normal. 2 Alternative definitions for evaluating whether an individual has COPD include the GOLD criteria before bronchodilation, lower limit of normal after bronchodilation, lower limit of normal before bronchodilation, and European Respiratory Society guidelines. 2

A systematic literature review was not undertaken on the data from the Global Burden of Disease 2019 study; the last systematic review was carried out for the Global Burden of Disease 2016 study by the Institute for Health Metrics and Evaluation. Table S1 provides details on the search terms used in the previous systematic literature review. The Global Burden of Disease 2019 study used several data sources for extracting data on COPD (that is, prevalence, incidence, and remission data) from the literature: hospital claims data, proportion data for each of the GOLD definitions for the severity of COPD, and data from the Burden of Obstructive Lung Disease study.

Data on the prevalence, incidence, and remissions for COPD were extracted from the literature provided by collaborators at the Institute for Health Metrics and Evaluation, and all included studies used measures based on spirometry. Hospital claims data were used for non-fatal estimates and vital registrations for cause of death. Proportion data for each of the GOLD definitions for the severity of COPD were extracted from the literature, when information about severity was available. The models estimated the three classes of severity of COPD (I, II, III-IV) separately, and this information was used in the modelling process to categorise COPD according to the level of severity. The English Longitudinal Study of Ageing and claims data from the USA were added to the data for the Global Burden of Disease 2019 study. In total, data were obtained for 57 of the 204 countries and territories, which were collapsed and aggregated to produce estimates for each age group, sex, location, and year. 2 The studies included in the modelling process can be found here https://ghdx.healthdata.org/gbd-2019/data-input-sources .

Mortality from COPD was estimated from vital registration and surveillance data from the Global Burden of Disease cause of death database, but verbal autopsy data were only mapped to an overall chronic respiratory disease model. Individual data were excluded when the data points were implausibly high or low, conflicted substantially with established age or temporal patterns, or conflicted substantially with other data sourced from the same locations or similar locations (that is, similar sociodemographic index). 2

Disease model

Mortality from COPD was estimated with Cause of Death Ensemble modelling (CODEm) for an age range of 1 to ≥95 years, with specific models for men and women. Table S2 shows the covariates used in the CODEm.

The burden of COPD was estimated in two stages: the DisMod-MR 2.1 model was used to estimate the prevalence and incidence of COPD and the proportion of patients in each of the GOLD severity classes for COPD was estimated with DisMod-MR 2.1. Then, the prevalence and incidence of COPD were categorised by age, sex, and location for each level of severity. 2 In stage 1, remission was set at 0, because individuals do not recover when they have COPD because symptoms can only be managed. The incidence ceiling was set at 0.0002 before age 15 years and at 0.0005 before age 30 years, to prevent any spurious overestimation in the age ranges with little or no primary data. 2 The models also included country level covariates that described spatiotemporal patterns to improve estimations, particularly in locations with inadequate data. Also, covariates included in the models were the COPD standardised exposure covariates (SEV, a scalar that combines exposure to all Global Burden of Disease risks that influence COPD), healthcare access and quality index, and the proportion of countries with an elevation above 1500 m. 2 In stage II, data from the surveys that reported the prevalence of COPD for each of the GOLD severity classes were used to estimate the overall percentage of all patients with COPD in each of the severity classes. 2

Severity and years lived with disability

Codes from the ICD-10 (international classification of diseases, 10th revision; J41, J42, J43, J44, and J47) and ICD-9 (international classification of diseases, ninth revision; 491-492, and 496) were use for mapping COPD. In the Global Burden of Disease 2017 study, J40 and 490 (bronchitis, not specified as acute or chronic) and J47 and 494 (bronchiectasis) were not included, however. 2 The three GOLD classes are not a direct measure of disease severity, but rather reflect a grading system based on a physiological measurement. Data from the Medical Expenditure Panel Survey (US, 2001-2011) were used to map the epidemiological findings into the three COPD health states, for which disability weights had been previously identified. More specifically, the GOLD class designations estimated for the US in 2005 (midpoint of the years included in the Medical Expenditure Panel Survey) were converted into the Global Burden of Disease classifications of asymptomatic, mild, moderate, and severe COPD. Table S3 shows the three health states for COPD (mild, moderate, and severe), lay descriptions, and disability weights. 2 Finally, the severity levels were multiplied by the severity specific disability weights to produce the years lived with disability.

Compilation of results

The number of deaths in each age group was multiplied by the remaining life expectancy in that age group, according to the Global Burden of Disease standard life table, to estimate the years of life lost. Years of life lost and years lived with disability were then summed to produce DALYs. The level of uncertainty was calculated by sampling 1000 draws at each computational step and combining uncertainty from several different sources (that is, input data, corrections of measurement error, and estimates of residual non-sampling error). The uncertainty intervals were defined as the 25th and 975th values of the ordered draws. The relation between the burden of COPD (DALYs) and sociodemographic index for the 21 regions and 204 countries and territories were examined with Smoothing Splines models. 25 Sociodemographic index, which ranges from 0 (least developed) to 1 (most developed), is a composite indicator of lag dependent income per capita and consists of the gross domestic product per capita (smoothed over the previous decade), average number of years of education for the population (>15 years old), and total fertility rate in those aged <25 years. The age standardised point prevalence, death, and DALY rates were mapped with R software (version 3.5.2).

Risk factors

Strong evidence indicates that the risk factors that cause COPD are 24 : smoking status, pollution from ambient particulate matter, occupational exposure to particulate matter, gases, and fumes, household air pollution from solid fuels, exposure to secondhand smoke, ambient ozone pollution, low temperatures, and high temperatures. The proportion of DALYs that were attributable to each COPD risk factor was also reported. Definitions of these risk factors and their relative risks for COPD have been previously reported. 24

Patient and public involvement

Because the study used publicly available aggregate data, no patients were involved in setting the research question or the outcome measures, nor were they involved in the design or implementation of the study.

Global level

In 2019, 212.3 million ( table 1 ) prevalent cases of COPD were reported globally, with an age standardised point prevalence of 2638.2 per 100 000, a decrease of 8.7% since 1990. COPD accounted for 3.3 million deaths in 2019, with an age standardised rate of 42.5, a decrease of 41.7% since 1990. In 2019, the number of DALYs for COPD globally was 74.4 million, with an age standardised rate of 926.1 DALYs per 100 000, a 39.8% decrease since 1990 ( table 1 ).

Prevalent cases, deaths, and disability adjusted life years (DALYs) for chronic obstructive pulmonary disease in 2019, and percentage change in age standardised rates (ASRs) per 100 000, by Global Burden of Disease region, from 1990 to 2019 (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

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Regional level

In 2019, high income North America (3558.4), South Asia (3298.8), and Australasia (3192.8) had the highest age standardised point prevalences for COPD (per 100 000), whereas Andean Latin America (1382.6), high income Asia Pacific (1500.7), and eastern sub-Saharan Africa (1503.5) had the lowest ( table 1 ). Oceania (112.1), South Asia (93.2), and East Asia (64.6) had the highest age standardised death rates from COPD in 2019, with the lowest rates in high income Asia Pacific (8.2), eastern Europe (15.0), and Andean Latin America (15.4) ( table 1 ). In 2019, Oceania (2309.9), South Asia (1915.9), and East Asia (1100.0) had the highest age standardised DALY rates (per 100 000), whereas high income Asia Pacific (224.5), Andean Latin America (281.9), and eastern Europe (381.5) had the lowest ( table 1 ). Figures S1-S3 show the age standardised point prevalence, death, and DALY rates of COPD, respectively, by sex in 2019 for all regions in the Global Burden of Disease study.

The largest increases in the age standardised point prevalence of COPD, from 1990 to 2019, were found in North Africa and the Middle East (30.6%), Caribbean (29.2%), and southern Latin America (19.8%), with the greatest decreases in eastern Europe (−29.5%), East Asia (−27.1%), and high income Asia Pacific (−20.5%) ( table 1 ). In the same period, all regions showed a decrease in the age standardised death rates from COPD, with the largest decreases in East Asia (−69.6%), eastern Europe (−55.8%), and central Europe (−43.2%) ( table 1 ). The age standardised DALY rates decreased in all regions from 1990 to 2019, with the largest decreases in East Asia (−68.9%), Eastern Europe (−50.8%), tropical Latin America (−36.2%), and central Europe (−34.6%) ( table 1 ). Figures S4-S6 show the percentage change, from 1990 to 2019, in age standardised point prevalence, death, and DALY rates for COPD by sex, respectively.

The number of prevalent cases of COPD increased from 114.9 million in 1990 to 212.3 million in 2019. East Asia, South Asia, and western Europe had the highest numbers of prevalent cases in 1990, and the same regions had the largest numbers in 2019 (table S4). The number of deaths caused by COPD increased from 2.5 million in 1990 to 3.3 million in 2019, with East Asia, South Asia, and western Europe having the highest numbers of deaths in 2019 (table S5). The number of DALYs due to COPD increased from 59.2 million in 1990 to 74.4 million in 2019, with South Asia, East Asia, and high income North America having the highest numbers of DALYs in 2019 (table S6).

National level

In 2019, the national age standardised point prevalence of COPD ranged from 668.5 to 4299.5 cases per 100 000. Denmark (4299.5), Myanmar (3963.7), and Belgium (3927.7) had the highest age standardised point prevalences of COPD, with Fiji (668.5), Guam (1010.0), and Kiribati (1019.4) having the lowest estimates ( fig 1 and table S4). The national age standardised death rates for COPD in 2019 varied from 7.4 to 182.5 deaths per 100 000. The highest rates were seen in Nepal (182.5), Papua New Guinea (145.0), and the Democratic People’s Republic of Korea (105.2), whereas the lowest rates were found in Japan (7.4), Barbados (8.3), and Kuwait (8.3) ( fig 2 and table S5). In 2019, the national age standardised DALY rate of COPD ranged from 177.7 to 3318.4 patients per 100 000. The highest rates were seen in Nepal (3318.4), Papua New Guinea (2902.7), and the Solomon Islands (2178.6) whereas the lowest rates were in Barbados (177.7), Antigua and Barbuda (178.2), and Peru (189.6) (fig S7 and table S6).

Age standardised point prevalence of chronic obstructive pulmonary disease per 100 000 population in 2019, by country (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

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Age standardised death rate of chronic obstructive pulmonary disease per 100 000 population in 2019, by country (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

The percentage change in the age standardised point prevalence, from 1990 to 2019, differed noticeably between countries, with Egypt (62.0%), Georgia (54.9%), and Nicaragua (51.6%) having the largest increases. In contrast, Turkmenistan (−47.9%), Singapore (−47.3%), and Ukraine (−45.6%) had the largest decreases (table S4). Over the same period, Nicaragua (68.5%), Norway (63.5%), and Sweden (36.9%) had the largest increases in the age standardised death rate, whereas the largest decreases were found in Singapore (−81.0%), China (−70.1%), and Turkmenistan (−69.9%) (table S5). Nicaragua (44.3%), Cuba (38.6%), and Norway (38.5%) had the largest increases in age standardised DALY rate of COPD from 1990 to 2019. In contrast, the greatest decreases during the study period were found in Singapore (−73.8%), China (−69.5%), and Turkmenistan (−65.1%) (table S6).

Age and sex patterns

In 2019, the global point prevalence of COPD started to increase in the 20-24 age group and peaked in the oldest age group (≥95 years). Similarly, the number of prevalent cases was highest in the 70-74 age group, but then decreased with increasing age. The number of prevalent cases of COPD was higher in men up to age 70-74 years, but COPD was more common in women older than 74 years ( fig 3 ). In 2019, the global COPD death rate reached its highest level in the oldest age group (≥95 years) and was higher in men across all age groups. The number of deaths was highest in the 80-84 age groups, for both sexes, after which the numbers decreased with increasing age. The number of deaths caused by COPD was higher in men aged up to 85-89 years (fig S8). In men, the global DALY rate of COPD increased up to age 85-89 years and then decreased with advancing age, whereas for women, the DALY rate increased up to the oldest age group (≥95 years). This rate was higher in men across all age groups. Also, the number of DALYs peaked in the 70-74 age groups and was higher in men up to age 85-89 years (fig S9).

Number of prevalent cases globally and prevalence of chronic obstructive pulmonary disease per 100 000 population, by age and sex in 2019. Lines indicate prevalent case with 95% uncertainty intervals for men and women (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

Association with the sociodemographic index

At the regional level, we found a reversed V shaped association between the sociodemographic index and the age standardised DALY rate of COPD, from 1990 to 2019. The age standardised DALY rate increased exponentially with increases in sociodemographic index, up to a sociodemographic index of about 0.4, before decreasing again. South Asia, Oceania, East Asia, and high income North America had higher than expected DALY rates, based on their sociodemographic index, from 1990 to 2019. In contrast, western sub-Saharan Africa, north Africa and the Middle East, tropical Latin America, central Latin America, Andean Latin America, southern Latin America, Caribbean, central Europe, and high income Asia Pacific had lower than expected burdens from 1990 to 2019 ( fig 4 ).

Age standardised disability adjusted life year (DALY) rates of chronic obstructive pulmonary disease for the 21 Global Burden of Disease regions by sociodemographic index, 1990–2019. Thirty points are plotted for each region and show the observed age standardised DALY rates from 1990 to 2019 for that region. Expected values, based on sociodemographic index and disease rates in all locations, are shown as a solid line. Regions above the solid line represent a higher than expected burden (eg, South Asia) and regions below the line show a lower than expected burden (eg, western sub-Saharan Africa) (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

At the country level, in 2019, the burden of COPD increased with increasing socioeconomic development up to a sociodemographic index of about 0.42, but then decreased up to a sociodemographic index of about 0.81 (fig S10). Countries and territories such as Nepal, Papua New Guinea, the Solomon Islands, the Democratic People’s Republic of Korea, India, and Bhutan had much higher than expected burdens, whereas Singapore, Peru, Guatemala, Ethiopia, and South Sudan had much lower than expected burdens (fig S10).

The proportion of DALYs due to COPD that were attributable to individual risk factors differed across the Global Burden of Disease regions. Globally, smoking (46.0%), pollution from ambient particulate matter (20.7%), and occupational exposure to particulate matter, gases, and fumes (15.6%) had the highest contributions to DALYs due to COPD ( fig 5 ). The proportion of DALYs due to COPD that were attributable to these three risk factors were higher in men (figs S11 and S12).

Percentage of disability adjusted life years (DALYs) due to chronic obstructive pulmonary disease attributable to each risk factor for the 21 Global Burden of Disease regions in 2019 (generated from data available at https://ghdx.healthdata.org/gbd-results-tool )

The proportion of DALYs due to COPD attributable to individual risk factors also differed by age group. The proportion of attributable DALYs for smoking increased with age up to 70-74 years and then decreased. Although the highest attributable DALYs for ambient particulate matter pollution was in the 65-69 age group, values did not differ significantly from other age groups. Moreover, the DALYs due to COPD attributable to occupational exposure to particulate matter, gases, and fumes increased with age, and the highest proportion was found in the 70-74 age group (17.9%) (fig S13). Figures S14 and S15 show the proportion of DALYs due to COPD attributable to the individual risk factors for men and women, respectively.

Principal findings

In this study, based on data from the Global Burden of Disease 2019 study, we have provided up-to-date information on the prevalence, death, and DALY counts of COPD from 1990 to 2019, together with the age standardised rates across 204 countries and territories. Globally, COPD accounted for 212.3 million prevalent cases, 3.3 million deaths, and 74.4 million DALYs in 2019. Although the age standardised point prevalence, deaths, and DALYs rates due to COPD have decreased over the past three decades, the absolute counts are on the rise, which could be as a result of population growth, as well as population ageing and an increase in life expectancy.

Comparison with other studies

A study in 2018 reported a decrease in the rates of COPD of 2.8% (95% uncertainty interval −6.9% to 0.9%) in years lived with disability at the global level between 2007 and 2017. 3 We found a decrease of 39.8% in the age standardised DALY rate of COPD between 1990 and 2019 globally. The differences could be because of variations in time intervals and methodology used in the studies. Also, a direct comparison with the Global Burden of Disease 2017 study is difficult because of several methodological changes between the two datasets. 2 A recent study reported the burden of COPD attributable to one risk factor (ambient PM2.5). 22 Although the prevalence estimates were not reported, the overall results for the increased death and DALY counts, despite the reduced corresponding rates, were consistent with our findings. 22

Epidemiological surveys have shown a prevalence of 11.8% based on the GOLD criteria, 6.0% based on the lower limit of normal criteria in Spain, 18 17.8% in the Abeshge District of Ethiopia, 19 4.9% in Iran, 20 17.5% in Tanzania, 26 and 5.9% in China. 27 This study found a global age standardised prevalence rate of 2.6%, however, which is considerably lower than in these studies. Several factors could be responsible for this difference: the year the study was conducted, the diagnostic criteria used, the number of participants included in each study, several of the studies were conducted at the subnational rather than the country level, and different methodologies were used to report the prevalence of COPD. Therefore, the observations of individual studies on the burden of COPD cannot be compared with our results because different criteria were used for the definition of COPD and the interpretation of the spirometry results, either before or after inhalation of bronchodilators. 28 In the Global Burden of Disease 2017 study, the reference definition used was based on the GOLD criteria after bronchodilation and alternative definitions were adjusted in relation to the reference definition. 2

The decrease in the burden of COPD that we found might be explained by the multiple strategies that have been implemented in recent years, such as the universal and comprehensive efforts to restrict tobacco use, improvements in occupational and environmental safety, reducing ambient and household pollution, better access to treatments for reducing the progression of the disease and relieving comorbidities, raising public awareness about preventive strategies, and the increased availability of diagnostic tests for differentiating between COPD and other chronic respiratory diseases. 4 28 The Global Burden of Disease project uses an estimation or modelling process, however, rather than reporting real data on the burden of COPD. This process might underestimate the actual COPD burden, which could lead to erroneous policy decisions.

The highest age standardised death rate in 2019 was found in Nepal, with 182.5 deaths per 100 000 population. A recent study used data from the Global Burden of Disease 2019 study to evaluate the burden of respiratory diseases attributable to pollution from ambient particular matter. 29 The authors found that Nepal had the highest death rate from COPD caused by air pollution in 2019; 25.9% of the deaths from COPD were caused by exposure to this risk factor. 29 With rapid urbanisation in Nepal, the use of motorised vehicles has increased from nearly 224 000 in 1990 to 1.3 million in 2012. 30 The high rate of deaths in Nepal might be because of failure to effectively regulate air pollutants and ineffective implementation of air quality control measures. 30

We found poor concordance between the point prevalence and death rates attributable to COPD when the regions were ranked. For example, although high income North America had the highest point prevalence for COPD for death rates, it was ranked eighth. This discrepancy is likely because of improvements in diagnostic measures, and better management of COPD and related comorbidities. Conversely, despite having the highest death rate, Oceania was ranked ninth for point prevalence rates, which could be because of premature mortality. Limited access to diagnostic tests and the subsequent late start of treatment, along with poor availability of medications, might shorten the overall survival rate of patients with COPD. This finding was more evident in low income countries where healthcare services are designed to treat acute conditions, such as infectious disorders, and are not appropriately developed to manage chronic diseases. 31 The World Health Organization reported that in 2019, bronchodilators and steroid inhalers were covered by only 55% and 19% of primary public healthcare facilities, respectively, in low income countries. 32 Also, COPD is often difficult to diagnose, 33 and ensuring that sufficient diagnostic equipment is available for each primary healthcare setting in regions where resource are restricted is needed to improve early detection and increase the chances of successful treatment.

The burden of COPD reaches its peak in older adults. Physiologically, diminished lung function in advanced ages, and impaired lung tissue repair and baseline inflammations, could contribute to the increased risk of death. 34 35 Moreover, COPD is associated with compromised health status 36 37 and multiple comorbidities, 38 which together with the natural comorbidity of old age increases the mortality rate of COPD in elderly people. This study found that people aged 80-84 years accounted for the highest numbers of deaths related to COPD. Previous research has reported that the most significant effect of total air pollution, among non-communicable diseases, is on deaths related to COPD. 39 Furthermore, research has estimated that the highest number of deaths from total air pollution were seen in those aged 80-84 years. 39 This age pattern is the same as the burden of COPD, suggesting that older individuals are more vulnerable to the adverse effects of air pollution. 40

Similar to previous studies, 22 39 we found that men had slightly higher age standardised point prevalence, death, and DALY rates, primarily reflecting differential smoking behaviours and exposure to occupational pollution. Studies have postulated that women are more susceptible to developing COPD from smoking than men, however. 41 42 A systematic review found that, even after smoking fewer cigarettes, women who smoked had a faster annual reduction in forced expiratory volume in one second than men. 43 Also, being a woman was associated with a higher risk of death and admission to hospital from respiratory failure and comorbidities caused by severe COPD. 44

This study found that risk factors, such as smoking, pollution from ambient particulate matter, and occupational exposure to particulate matter, gases, and fumes, were the largest contributors to the burden of COPD. Because these risk factors are mainly preventable and the disease can be effectively treated, controlling the burden of COPD requires more attention and a focused effort. Multiple initiatives have been developed to reduce exposure to these risk factors. 45 For example, in 2007, WHO endorsed a practical and cost effective plan for controlling the tobacco epidemic, MPOWER: Monitor tobacco use and prevention policies; Protect people from tobacco smoke; Offer help to quit tobacco use; Warn about the dangers of tobacco; Enforce bans on tobacco advertising, promotion, and sponsorship; and Raise taxes on tobacco. 46 This programme has six measures, focusing mainly on educating the public about the dangers of tobacco use and banning trade and advertising of tobacco products. 46 The latest report on the global tobacco epidemic indicates that 75% of countries, comprising a population of 5.3 billion people, are currently subject to at least one MPOWER measure at the highest level of achievement. 28

Global tobacco smoking has decreased by 27.5% over the past three decades. 47 Smoking is the most common risk factor for all chronic respiratory conditions 5 and, apart from being the leading risk factor for COPD, nearly half of smokers eventually develop the disease. 48 49 Therefore, preventing exposure to tobacco smoke would be the most effective long term strategy for reducing the burden of COPD. 47 The US has had success in controlling air pollution, mainly driven by interventions such as the 1990 Clean Air Act Amendments and the 2002 Nitrogen Oxides (NOx) State Implementation Plan Call regulation, 50 along with provisions for reducing anthropogenic emissions from different types of vehicles. 51 Accordingly, the US death burden caused by non-communicable diseases, particularly COPD, substantially decreased (by 54%) from 1990 to 2010. 52

In some low income regions, such as Oceania, and western, eastern, and central sub-Saharan Africa, household air pollution from solid fuels was the leading risk factor for COPD, rather than smoking, and this finding was more evident in women. In agreement with our results, a recent study in 13 low and middle income countries reported that participants with a history of exposure to household air pollution were 41% more likely to develop COPD, with a stronger association in women. 53 Furthermore, although household air pollution accounted for 13.5% of the prevalence of COPD, smoking explained 12.4% of the prevalence. 53 Research in China showed that women who did not smoke had a two to three times higher risk of COPD in rural areas, where exposure to biomass fuels was higher, than women in urban areas. 54 Measures such as the use of alternative clean fuels, improving kitchen ventilation, and providing better stoves could reduce the risk of COPD and improve the lung dysfunction in patients with the disease. 55 56 57 Consequently, formulating strict health measures towards preventing tobacco smoking and improving air pollution could be crucial approaches for healthcare policy makers in alleviating the burden of COPD. The new Air Quality Guidelines issued by WHO on 21 September 2021 recommend lower concentrations for gaseous and particulate pollutants based on recent evidence of the harmful effects from concentrations below those recommended in 2005. 58 Moreover, in November 2021, the European Environment Agency estimated that 58% (178 000) of premature deaths could have been avoided in 2019 if the new WHO’s Air Quality Guidelines had been implemented. 59

The relation between DALYs due to COPD and sociodemographic index was not monotonic at the national level, such that a positive association was found between the burden of COPD and the development level of countries, up to middle scores on the sociodemographic index, and then a decreasing trend was observed. Similarly, WHO reported that about 80% of deaths due to COPD occurred in low and middle income countries. 60 Moreover, based on the results of the Global Burden of Disease 2019 study, a reverse V shaped correlation was found between the burden of COPD caused by exposure to ambient PM2.5 and the sociodemographic index level. 22 Ambient PM2.5 is the leading cause of disease from air pollution globally and the most populated countries, like China and India with middle sociodemographic index scores, are estimated to have had the highest increase in deaths attributable to PM2.5 over the past decade. 39 Exposure to ambient particular matter is growing for countries with a lower sociodemographic index and decreasing for countries with a higher sociodemographic index. 24 The level of exposure to smoking has decreased for countries with high and middle sociodemographic index scores but the largest reduction were found in countries with a high sociodemographic index. 24 Apart from the effect of these individual level risk factors on the relation between sociodemographic index and the burden of COPD, the sociodemographic index is a broad surrogate indicator of poverty. Therefore, countries with a lower sociodemographic index would generally have poor access to healthcare services, including limited availability and affordability of diagnostic and therapeutic measures. These systemic deficiencies contribute to a high disease burden and premature death in patients with COPD.

Ultimately, equitable resource allocation and massive investments in regions with the most DALYs must be made to reduce the burden of COPD more effectively, with recognition that much less attention is paid to chronic respiratory diseases compared with other non-communicable diseases. 61 Also, the data reported here showed the substantial variations in the burden of COPD between countries, which should prompt the authorities of the most affected countries to fund new epidemiological surveys to enable a thorough understanding of the natural history of COPD. Because different chronic respiratory diseases have overlapping diagnostic criteria, 62 the COPD estimations might benefit from the provision of the least essential diagnostic modalities for every resource limited setting.

Strengths and limitations of this study

A strength of the study is that we have provided up-to-date and comprehensive estimates of levels and trends associated with COPD and its risk factors at the global, regional, and national levels, between 1990 and 2019. The study had several limitations. Firstly, only a small number of high quality epidemiological databases were available to estimate the burden of COPD. Secondly, some risk factors, such as genetic predisposition, although rare, could not be taken into account in our estimations. Thirdly, incorporating claims data into the input record might make the evidence unreliable because the validity is highly dependent on the bias correction process. Underdiagnosis of COPD is likely because of relief of respiratory symptoms by limiting activities that reduce the patient’s likelihood of seeking medical attention. Also, poor access to spirometry and lack of expertise in performing and interpreting spirometry data are important contributors to underdiagnosing COPD. 33 Fourthly, many countries do not have efficient systems for registering deaths, and therefore only verbal autopsy studies could be relied on for estimates of deaths. However, as previous studies did not differentiate between the distinct types of chronic respiratory diseases, this information could not be included for reporting the death estimates related to COPD, 2 suggesting possible underestimation of the evidence. Improving vital registration systems might improve the accuracy of these data and allow better management of the disease burden. These limitations highlight the importance of improving the accuracy of data collection and the use of more integrated case definitions, which would make comparisons between countries more valid.

Conclusions and policy implications

COPD is a major public health problem with extensive healthcare and economic costs. Although the point prevalence, death, and DALY rates declined during the study period, the corresponding counts are increasing. With an ageing population, COPD will continue to become an even greater problem in the future. The reported global, regional, and national burden of COPD, and its risk factors, could help to provide a more accurate projection of the future disease burden. This knowledge could guide policy makers in planning control measures and supply services to meet the rising healthcare demands that COPD and its comorbidities will create.

What is already known on this topic

A considerable proportion of the burden of chronic respiratory diseases is caused by chronic obstructive pulmonary disease (COPD)

The most recent study to use data from the Global Burden of Disease 2017 study reported decreases in the age standardised mortality and disability adjusted life year (DALY) rates from 1990 to 2017

Smoking was the largest risk factor for deaths due to COPD, and a negative association was found between the burden of COPD and the sociodemographic index

What this study adds

The global age standardised point prevalence, death, and DALY rates for COPD in 2019 were 8.7%, 41.7%, and 39.8% lower than in 1990, respectively

In men, the global DALY rate of COPD increased up to age 85-89 years and then decreased with advancing age, whereas the rate increased up to age ≥95 years in women

Regionally, a reversed V shaped association was found between sociodemographic index and the age standardised DALY rate of COPD, with smoking, ambient particulate matter pollution, and occupational exposure to particulate matter, gases and fumes contributing most to DALYs due to COPD

Ethics statements

Ethical approval.

The study was reviewed and approved by the ethics committee of Shahid Beheshti University of Medical Sciences, Tehran, Iran (IR.SBMU.RETECH.REC.1400.862).

Data availability statement

The data used for the analyses in the study are publicly available at https://ghdx.healthdata.org/gbd-results-tool .

Acknowledgments

We would like to thank the staff of the Institute for Health Metrics and Evaluation and its collaborators who prepared these publicly available data. The study is based on publicly available data and solely reflects the opinion of its authors and not that of the Institute for Health Metrics and Evaluation. We would also like to acknowledge the support of the Social Determinants of Health Research Centre at the Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Contributors: SS and A-AK contributed equally as corresponding authors and designed the study. SS and MAM analysed the data and performed the statistical analyses. SS, KC-C, MN, SAN, MJMS, JAH, KA, GSC, A-AK, JSK drafted the initial manuscript. SS and A-AK are the guarantors. All authors reviewed the drafted manuscript for critical content. All authors approved the final version of the manuscript. The corresponding authors (SS and A-AK) attest that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Funding: The Bill and Melinda Gates Foundation, who were not involved in any way in the preparation of this manuscript, funded the Global Burden of Disease study. This report was funded by Shahid Beheshti University of Medical Sciences, Tehran, Iran (grant No 30336). The funder had no role in considering the study design or in the collection, analysis, interpretation of data, writing of the report, or decision to submit the article for publication.

Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/disclosure-of-interest/ and declare: support from Shahid Beheshti University of Medical Sciences for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Dissemination to participants and related patient and public communities: The results will be disseminated through media outlets and presentations at scientific conferences and academic events. Given that no patients were recruited for the study, there are no plans to disseminate the results to study participants.

The manuscript’s guarantors (SS and A-AK) affirm that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

Provenance and peer review: Not commissioned; externally peer reviewed.

Publisher’s note: Published maps are provided without any warranty of any kind, either express or implied. BMJ remains neutral with regard to jurisdictional claims in published maps.

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

• Sriram KB ,
• Abbafati C ,
• GBD 2019 Diseases and Injuries Collaborators
• GBD 2017 Disease and Injury Incidence and Prevalence Collaborators
• Mannino DM ,
• Soriano JB ,
• Kendrick PJ ,
• Paulson KR ,
• GBD Chronic Respiratory Disease Collaborators
• Huertas A ,
• Lopez-Campos JL ,
• Quintana-Gallego E
• Gerayeli FV ,
• ↵ criteria GIfCOLDG. GLOBAL STRATEGY FOR PREVENTION, DIAGNOSIS AND MANAGEMENT OF COPD: 2022 Report 2022 [Available from: https://goldcopd.org/2022-gold-reports-2/ accessed April 2, 2022 2022.
• Burney PG ,
• Luczynska C ,
• ↵ (ECRHS) ECRHS. About the ECRHS 2022 [cited 2022]. Available from: https://www.ecrhs.org/ accessed April 2, 2022 2022.
• Adeloye D ,
• Global Health Epidemiology Reference Group (GHERG)
• Halbert RJ ,
• Natoli JL ,
• Badamgarav E ,
• Rehman AU ,
• Hassali MAA ,
• Muhammad SA ,
• Leivseth L ,
• Alfageme I ,
• Miravitlles M ,
• Woldeamanuel GG ,
• Mingude AB ,
• Sharifi H ,
• Jamaati H ,
• Abbasifard M ,
• GBD 2019 Demographics Collaborators
• Murray CJL ,
• Aravkin AY ,
• GBD 2019 Risk Factors Collaborators
• Magitta NF ,
• Walker RW ,
• López-Campos JL ,
• Menezes AM ,
• Forum of International Respiratory Societies working group collaboration
• ↵ World Health Organization. Assessing national capacity for the prevention and control of noncommunicable diseases: report of the 2019 global survey 2020. https://apps.who.int/iris/rest/bitstreams/1272195/retrieve .
• Gershon AS ,
• Doherty DE ,
• Sonia Buist A
• Anthonisen NR ,
• State of Global Air
• Bateson TF ,
• Sørheim IC ,
• Johannessen A ,
• Gulsvik A ,
• Silverman EK ,
• Postma DS ,
• Prescott E ,
• Andersen PK ,
• Reitsma MB ,
• Mullany EC ,
• Rennard SI ,
• Lundbäck B ,
• Lindberg A ,
• Lindström M ,
• Obstructive Lung Disease in Northern Sweden Studies
• Chestnut LG ,
• Siddharthan T ,
• Grigsby MR ,
• Goodman D ,
• Riojas-Rodríguez H ,
• Marrón-Mares AT ,
• Schilmann A ,
• Perez-Padilla R ,
• Chapman RS ,
• Organization WH
• ↵ European Environment Agency (EEA). Cleaner air could have saved at least 178 000 lives across the EU in 2019. 2021.
• ↵ Chronic obstructive pulmonary disease (COPD) 2021 [Available from: https://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary-disease-(copd)2021 .
• Anderson GF ,
• Perez-Padilla R

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• v.14(3); 2018 Sep

Lifestyle interventions in prevention and comprehensive management of COPD

Nicolino ambrosino.

1 Istituti Clinici Scientifici Maugeri, IRCCS Montescano, Pavia, Italy

Enrica Bertella

2 Istituti Clinici Scientifici Maugeri, IRCCS Lumezzane, Brescia, Italy

Chronic respiratory diseases are among the four major human chronic diseases. Tobacco smoke as well as environmental pollutants, infections, physical activity and nutritional status play a role in the prevalence, development and/or progression of chronic obstructive pulmonary disease (COPD).

Changes in lifestyle are possible and may be beneficial in prevention and comprehensive management of COPD. Population-level interventions aimed at early diagnosis, promotion of vaccinations and prevention of infections, and reductions in smoking, environmental pollutants, physical inactivity, obesity and malnutrition may increase the number of life-years lived in good health.

Educational aims

• To improve awareness of the influence of lifestyle on natural history of COPD.
• To describe the effects of some interventions to modify lifestyle in prevention and management.
• To provide information on the main clinical results.
• To define recommendations and limitations.

Short abstract

Lifestyle influences health status and research has identified ways to reduce or prevent the burden of COPD: control tobacco use, address environmental exposures, improve prevention/treatment of infections, promote physical activity and better nutrition http://ow.ly/fOJt30kGItv

Introduction

The World Health Organization (WHO) includes chronic respiratory diseases (CRD) among the four major human chronic diseases and lung disease accounts for an estimated 7.5 million deaths per year, ∼14% of annual deaths worldwide [ 1 ]. These diseases are a major economic burden and source of gender and social inequalities within and between countries. The most frequent diseases include, in descending frequency, chronic obstructive pulmonary disease (COPD), lung cancer, tuberculosis, lung infections, asthma and interstitial lung diseases [ 1 ]. These complex diseases often begin in early childhood, and affect patients throughout their life, worsening progressively with ageing mainly through increasingly frequent and severe exacerbations [ 2 – 4 ]. The European Union indicates prevention, early diagnosis and treatment of these diseases as a priority for public health policy [ 5 ].

Lifestyle influences health status starting from adolescence. There is evidence that even in childhood negative impacts on health can be observed. This is more evident when health is defined according to the “positive health” definition proposed by H uber et al. [ 6 ], for example obese children score significantly lower on daily functioning and quality of life than non-obese children. Data show that individual behaviour-related, family behaviour-related and “environmental” risk factors result in shorter healthy life expectancy and shorter chronic disease-free life expectancy [ 7 ]. Tobacco smoke, as well as environmental pollutants, irritants and allergens, plays a role in the prevalence, development and progression of many CRD. Smoking habit adds to other behavioural risk factors. For example, in the USA >50% of adults have at least two behavioural risk factors with a synergistic negative influence on chronic diseases [ 8 ].

Changes in lifestyle are possible and may benefit the comprehensive management of these diseases: from 2000 to 2010, Danish people with and without COPD, increased their leisure time physical activity and reduced smoking [ 9 ]. Systematically designed population-level interventions aimed at early diagnosis, vaccination promotion, and reducing smoking, physical inactivity, obesity and malnutrition may increase life-years lived in good health [ 10 ]. Interventions need to be mapped conscientiously in order to have effects, for example based on the well-known intervention mapping protocol [ 11 ].

Early diagnosis

The first step for any effective management of disease is an appropriate and early diagnosis. Although comprehensive physiological assessment is important, the cornerstone of diagnosis and monitoring of COPD is the assessment of lung function. Unfortunately many pulmonologists do not always recognise the value of their main diagnostic tool in the same way as cardiologists recognise ECG or echocardiography. Despite many barriers to widespread routine lung function tests around the world, mass screening campaigns may discover new cases of COPD. Furthermore, an early diagnosis may influence the patient's motivation to quit smoking [ 12 ].

Vaccination and prevention of infections

Influenza vaccination.

The injectable trivalent, inactivated influenza vaccine is composed of seasonal H3N2, H1N1 and influenza B and is available each year as an annual dose [ 13 ]. The trivalent influenza vaccine is effective in preventing hospitalisations and other serious outcomes [ 14 ]. Therefore, public health authorities and the media should highlight the overall benefit of influenza vaccines over time despite their year-to-year variability, especially in an age of “internet-based medicine” resulting in low confidence in evidence-based medicine and a reduction in vaccine coverage. A few studies have shown that inactivated vaccines reduce influenza-associated exacerbations occurring three or more weeks after vaccination in COPD patients [ 15 ].

Pneumococcal vaccine

Limited evidence from randomised controlled trials suggests that injectable polyvalent pneumococcal vaccines may provide some protection against morbidity in persons with COPD [ 16 ]. The adult pneumococcal vaccine is a 23-valent polysaccharide vaccine (PPSV23) including the most common serotypes associated with disease in adults [ 17 ]. However, the clinical efficacy of PPSV23 tends to reduce with age and wane over time: it may be not effective in patients >65 years of age [ 18 ]. The 13-valent protein conjugated pneumococcal vaccine (PCV13) has superior immunogenicity and increases the duration and memory of immune responses. However, it does not cover all serotypes associated with invasive disease [ 18 ]. Evidence-based guidelines recommend pneumococcal vaccination in patients with CRD and PCV13 has been included in most national recommendations. The US Advisory Commitee on Immunisation Practices currently recommends PVC13 followed by PPVS23 for all adults >65 years of age and not previously vaccinated, and in persons >19 years of age at high risk of pneumococcal disease [ 19 ].

Antibiotics

One of the major objectives of the management of COPD is the prevention and effective treatment of exacerbations. Patients with COPD with sputum production, purulence and increasing dyspnoea may benefit from appropriate antibiotic therapy. Some studies have evaluated the continuous or intermittent use of antibiotics even when patients are stable to prevent exacerbations. Several antibiotics have been developed to be nebulised for both treatment and prevention of acute exacerbations [ 20 ].

Smoking cessation

There is no need for further evidence that smoking causes cancers, respiratory and cardiovascular diseases and is associated with an ∼10-year reduction in life expectancy [ 21 ]. Total tobacco-attributable deaths, including those due to COPD, are projected to rise from 5.4 million in 2005 to 8.3 million in 2030 [ 22 ], due to the increasing number of smokers [ 23 ]. Effects manifest after a long, silent lag-time preventing individuals from quitting smoking before symptoms start [ 24 ]. Smoking cessation strategies require resources and time, but may influence the natural history of diseases achieving long-term success rates of up to 25% [ 25 ].

Law-enforced smoking bans

Law-enforced smoking bans may lead to improved health outcomes through reductions in second-hand smoke, but are not enough. A Swiss study showed chronic damage from long-term second-hand smoke exposure and that respiratory symptoms such as cough decreased within 12 months after the national ban [ 26 ]. There is also evidence of a positive impact of national smoking bans on cardiovascular health outcomes and mortality for associated smoking-related diseases, although the effects on perinatal health seem less consistent [ 27 ].

Pharmacological interventions

Nicotine replacement therapy (NRT), bupropion, varenicline and cytisine improve quitting rates. Combinations of NRT and varenicline as well as nortriptyline are effective too. No treatment shows such adverse events as to prevent or reduce its use [ 28 , 29 ]. Interventions combining pharmacotherapy and behavioural support increase smoking cessation success rate as compared with a minimal intervention or usual care [ 30 ].

Electronic cigarettes

Electronic cigarettes (e-cigarettes) are devices that vaporise nicotine to support smokers in quitting or reduce their smoking habits. Low-quality studies show a positive relationship between e-cigarette use and smoking cessation [ 31 ]. The potential benefits of e-cigarettes to the individual smoker should be compared with the potential harm to the population of increased social acceptability of smoking. It has been recommended that electronic devices should be restricted or banned until more information about their safety is available, and if allowed, that they should be closely regulated as medicines or tobacco products [ 32 ].

Behavioural approach

Behavioural treatment is recommended for people attempting smoking cessation by identifying and modifying behaviours able to influence smoking habits. Individual, group or telephone counselling interventions are effective and their power increases with the intensity of treatment [ 33 ]. To date, there is no evidence for preferring any form of behavioural or pharmacological treatment.

Environmental protection

Poor indoor air quality, especially from biomass fuels, is a well-recognised risk factor for COPD and other CRD, which is potentially modifiable by use of cleaner fuels, cooking stoves or heaters, and improved ventilation. According to the most recent WHO report ∼7 million people die every year due to exposure to fine particles, with polluted air accounting for 43% of deaths due to obstructive lung diseases and 29% of those due to lung cancer [ 34 ]. Traffic-related air pollution is associated with an increased incidence of asthma in children [ 35 ].

Household air pollution is a leading cause of disability-adjusted life years globally, resulting in systemic health effects that are evident from pre-conception to old age. There are many sources of household air pollution, which differ from country to country. Indoor tobacco smoking, construction materials used in building houses, fuels used for cooking, heating and lighting, and the use of pesticides and chemicals for cleaning are some of the many sources that contribute to household air pollution [ 36 ].

Occupational exposure is also an important, global cause of acute as well as CRD. Unlike many other noncommunicable lung diseases, the causes of many occupational lung diseases are well understood and they should be controlled by means of established and effective approaches. For example, the risks from exposure to silica and asbestos are well known, as are the means of their prevention. The incidence of interstitial and malignant lung diseases remains unacceptably high due to lack of control measures or to new modalities of exposures. With the advent of innovative technologies, new threats are continually introduced to the workplace [ 37 ].

The incidence of environmental and occupational lung disease has decreased in many western countries, whereas in rapidly developing countries with increasing population growth these exposures are still associated with high disease incidence. For example, the overall prevalence of COPD in the Chinese adult population is 8.6%. Smoking exposure of ≥20 pack-years, exposure to annual mean particulate matter with a diameter <2.5 μm of 50–74 μg⋅m −3 or ≥75 μg⋅m −3 , a body mass index (BMI) <18.5 kg⋅m −2 , childhood chronic cough, parental history of respiratory diseases, and low education are major risk factors [ 38 ].

Physical activity

Physical inactivity has a major impact on world health. Sedentary behaviour is a risk factor for disease, (partly) independent of physical activity [ 39 ]. It has been calculated that lifestyle modification leading to reduction and elimination of physical inactivity would avoid between 6% and 10% of the major noncommunicable diseases, such as coronary heart disease, type 2 diabetes, breast and colon cancers, and increase life expectancy [ 40 ]. Higher levels of physical activity increase healthy and chronic disease-free years in men and women, but the effect is greater among persons with a low rather than a high occupational status [ 41 ]. Physical activity is associated with a lower risk of mortality and cardiovascular events in individuals from low-, middle- and high-income countries [ 42 ]. There is an association between levels of physical activity and all-cause and cardiovascular disease mortality risks, with protective effects at lower than the commonly recommended intensity levels for walking and sport/exercise, but not domestic physical activity [ 43 ].

There are differences in practice of physical activity within countries, mainly due to inactivity of females and environmental factors, such as the walkability of cities [ 44 ]. Therefore, public interventions aimed at increasing the walkability or cyclability of cities would result in improvements in public health.

Daily physical activity of patients with COPD is reduced in the early phases of disease as compared with healthy age-matched controls and worsens over time, with important clinical consequences [ 45 ]. Improving aerobic fitness during childhood and adolescence is associated with greater lung volumes in adulthood, but not airway calibre [ 46 ]. Moderate-to-high levels of regular physical activity are associated with reduced lung function decline and exacerbations in patients with COPD, and a reduced risk of developing COPD among smokers [ 47 , 48 ]. Family may also play a role: patients with COPD are more inactive and sedentary than their loved ones, despite relatively similar exercise motivation. Nevertheless, patients with an active loved one are more active themselves and have a higher likelihood of being active [ 49 ].

In patients with COPD exercise training programmes improve symptoms, exercise capacity and health-related quality of life (HRQoL) [ 50 , 51 ], although the observed benefits do not consistently translate into enhanced physical activity levels [ 52 ]. As a consequence guidelines for management of COPD suggest that exercise training should be provided to the vast majority of patients [ 19 , 50 ]. The structure of an exercise programme is described in reference [ 50 ]. Figure 1 shows an inpatient exercise training programme.

An inpatient exercise training programme in progress.

Different patterns of change in activity levels following pulmonary rehabilitation can be found in patients with COPD. Focusing on light physical activity might be a potential strategy to make patients less sedentary [ 53 ]. Benefits of a low-intensity intervention may be limited to patients with moderate airway obstruction [ 54 ]. Physical activity can enhance the benefits of smoking cessation. Former smokers that are physically active may show improved HRQoL that tends towards that of nonsmokers [ 55 ].

In many countries, there are barriers to hospital-based supervised exercise training programmes, such as a high number of patients, transportation, programme costs and geographical obstacles [ 56 ]. Home programmes may be a useful and equivalent alternative to outpatient hospital-based programmes [ 57 ]. Tele-rehabilitation may also be potentially useful to deliver and maintain the benefits of pulmonary rehabilitation in difficult-to-reach areas [ 58 ].

Monitoring daily step count and activity time is the most valid measurement of physical activity, and may benefit patients in achieving an effective daily physical activity [ 59 ]. Pedometers have advanced greatly in recent years, providing daily step estimates, and smartphones with miniaturised accelerometre apps are technologies which many patients may not use as they probably should [ 60 ,  61 ]. However, some caution must be devoted when suggesting physical activity in older persons with mobility limitations in whom excessive physical activity may be associated with higher respiratory hospitalisation rates than health education [ 62 ].

Food intake is a modifiable factor for development and progression of COPD and other CRD. A healthy diet can help to maintain good health [ 63 ]. Emerging evidence indicates that nutrition can influence development and progression of obstructive respiratory diseases such as COPD and asthma [ 64 ]. In a population study, below the range of 22.5–25 kg⋅m −2 BMI correlated inversely with overall mortality, mainly because of strong inverse correlation with respiratory diseases and cancer [ 38 , 65 ].

There is evidence that unintended weight loss is an independent determinant of survival, suggesting the need for weight maintenance in patient care. The important role of muscle wasting and decreased muscle oxidative metabolism in impaired physical performance and mortality of patients with COPD has been demonstrated, providing new evidence for nutritional supplementation as an adjunct to exercise training, not only in advanced disease but also in the earlier stages of disease. In addition, the central role of osteoporosis, visceral adiposity and poor dietary quality in COPD risk and progression makes dietary awareness and intervention an integral part of disease management, from prevention to chronic respiratory failure [ 66 ].

Nutritional supplementation promotes weight gain and increases muscle mass among patients with COPD, especially if they are undernourished and when combined with exercise training [ 66 ,  67 ]. However, the potential of nutritional supplementation to enhance efficacy of exercise training is not well established. Limited studies are available that differ in COPD target population and nutrient composition, and most of them are underpowered [ 68 ].

The quality of food also matters. The Mediterranean diet has protective effects for allergic respiratory diseases and is associated with asthma control, while consumption of pro-inflammatory foods may contribute to worsening the diseases and Western diet may be associated with an increase in asthma exacerbations [ 69 ]. High consumption of fruits and vegetables is associated with reduced COPD incidence in both current and ex-smokers, but not in never-smokers [ 70 ]. Better diet quality is associated with improved asthma symptoms over time in never-smokers, independent of BMI [ 71 ]. Current evidence suggests a positive impact of agriculture-based food security programmes on dietary indicators in low and lower-middle income countries [ 72 ].

Education and self-management

Patients' adaptation to their diseases is an important factor in comprehensive management of COPD [ 73 ]. In order to maintain patients' well-being, promote self-efficacy and improve patients' health outcomes, programmes of collaborative self-management have been designed. These programmes increase patients' knowledge about their disease, the use of drugs and devices, the management of symptoms and exacerbations, and physical activity, and enhance their skills to cooperate in disease management [ 50 ]. A meta-analysis showed that self-management programmes can provide a significant benefit to COPD patients in terms of HRQoL, exercise capacity and some aspects of their self-efficacy [ 74 ]. Adherence to a written action plan can reduce exacerbation recovery time by enabling prompt awareness of symptom worsening and access to drugs [ 75 ].

Research has identified many ways to reduce or prevent the burden of COPD and other CRD; however, there is still a huge gap between scientific knowledge and population-based interventions. Research to address and implement the required interventions involves biomedical advances as well as social, psychological, economic, and policy research. We still need to elaborate more effective evidence-based policies and interventions to control tobacco use, address environmental pollution and occupational exposures, improve the prevention and treatment of respiratory infections, and promote physical activity and better nutrition worldwide.

• The first step to properly manage any disease is to make an early and appropriate diagnosis.
• The cornerstone of early diagnosis and monitoring of COPD is to assess lung function.
• Smoking cessation and reduction of environmental exposures is key.
• Population-level interventions aimed at early diagnosis, promotion of vaccinations, and reducing smoking, physical inactivity, obesity and malnutrition may increase life-years lived in good health.
• Pharmacotherapy and nicotine replacement reliably increase long-term smoking abstinence rates.
• The effectiveness and safety of e-cigarettes is uncertain at present.
• To date, there is no evidence for preferring any form of behavioural or pharmacological treatment for smoking cessation.
• Influenza and pneumococcal vaccination may decrease the incidence of respiratory complications and respiratory tract infections.
• Antibiotic therapy has a role in prevention of COPD exacerbations.
• Pulmonary rehabilitation improves symptoms, quality of life, and physical and emotional participation in everyday activities.
• Promotion of physical activity is crucial, as is provision of appropriate dietary advice.
• Education and self-management are useful.

Self-evaluation questions

• a) The first two major chronic human disesaes
• b) The first three major chronic human diseases
• c) The first four major chronic human diseases
• d) The second 10 chronic human diseases
• a) It varies year by year
• b) Is has not been demonstrated
• c) It may be influenced by the associated pneumococcal vaccination
• a) Nicotine replacement therapy
• c) E-cigarettes
• a) Use of pedometers
• b) Supervised exercise training
• c) Coaching

Suggested answers

• a–c.

Conflict of interest: None declared.

Early Diagnosis and Treatment of COPD and Asthma - A Randomized, Controlled Trial

Affiliation.

• 1 From the Ottawa Hospital Research Institute, University of Ottawa, Ottawa (S.D.A., K.L.V., G.G.A., S.M.), the Desautels Faculty of Management (G.A.W.) and the Department of Medicine (N.E.), McGill University, and the Department of Medicine, Université de Montreal (C.L.), Montreal, the Department of Medicine, University of British Columbia, Vancouver (C.B.), Centre de Recherche, Hôpital Laval, Université Laval, Quebec, QC (L.-P.B., A.C.), Firestone Institute for Respiratory Health, McMaster University, Hamilton, ON (R.A.M.), the Department of Medicine, University of Saskatchewan, Saskatoon (E.P.), Cumming School of Medicine, University of Calgary, Calgary, AB (S.K.F.), the Department of Medicine, University of Alberta, Edmonton (I.M., M.B.), the Department of Medicine, Memorial University, St. John's, NL (T.A.), the Department of Medicine, Queen's University, Kingston, ON (M.D.L.), the Department of Medicine and the Li Ka Shing Knowledge Institute of St. Michael's Hospital, University of Toronto, Toronto (S.G.), the Department of Medicine, University of Western Ontario, London (C.J.L.), the Department of Medicine, Dalhousie University, Halifax, NS (P.H.), and the Department of Medicine, University of Manitoba, Winnipeg (M.A.) - all in Canada.
• PMID: 38767248
• DOI: 10.1056/NEJMoa2401389

Background: Many persons with chronic obstructive pulmonary disease (COPD) or asthma have not received a diagnosis, so their respiratory symptoms remain largely untreated.

Methods: We used a case-finding method to identify adults in the community with respiratory symptoms without diagnosed lung disease. Participants who were found to have undiagnosed COPD or asthma on spirometry were enrolled in a multicenter, randomized, controlled trial to determine whether early diagnosis and treatment reduces health care utilization for respiratory illness and improves health outcomes. Participants were assigned to receive the intervention (evaluation by a pulmonologist and an asthma-COPD educator who were instructed to initiate guideline-based care) or usual care by their primary care practitioner. The primary outcome was the annualized rate of participant-initiated health care utilization for respiratory illness. Secondary outcomes included changes from baseline to 1 year in disease-specific quality of life, as assessed with the St. George Respiratory Questionnaire (SGRQ; scores range from 0 to 100, with lower scores indicating better health status); symptom burden, as assessed with the COPD Assessment Test (CAT; scores range from 0 to 40, with lower scores indicating better health status); and forced expiratory volume in 1 second (FEV 1 ).

Results: Of 38,353 persons interviewed, 595 were found to have undiagnosed COPD or asthma and 508 underwent randomization: 253 were assigned to the intervention group and 255 to the usual-care group. The annualized rate of a primary-outcome event was lower in the intervention group than in the usual-care group (0.53 vs. 1.12 events per person-year; incidence rate ratio, 0.48; 95% confidence interval [CI], 0.36 to 0.63; P<0.001). At 12 months, the SGRQ score was lower than the baseline score by 10.2 points in the intervention group and by 6.8 points in the usual-care group (difference, -3.5 points; 95% CI, -6.0 to -0.9), and the CAT score was lower than the baseline score by 3.8 points and 2.6 points, respectively (difference, -1.3 points; 95% CI, -2.4 to -0.1). The FEV 1 increased by 119 ml in the intervention group and by 22 ml in the usual-care group (difference, 94 ml; 95% CI, 50 to 138). The incidence of adverse events was similar in the trial groups.

Conclusions: In this trial in which a strategy was used to identify adults in the community with undiagnosed asthma or COPD, those who received pulmonologist-directed treatment had less subsequent health care utilization for respiratory illness than those who received usual care. (Funded by Canadian Institutes of Health Research; UCAP ClinicalTrials.gov number, NCT03148210 .).

Copyright © 2024 Massachusetts Medical Society.

Associated data

• ClinicalTrials.gov/NCT03148210

Grants and funding

• FDN grant #154322/Institute of Circulatory and Respiratory Health