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Improving the quality of care in health systems: towards better strategies

Jennifer dixon.

The Health Foundation, 8 Salisbury Square, London, EC4Y 8AP UK

Associated Data

not applicable.

Improving the quality of health care across a nation is complex and hard. Countries often rely on multiple single national level programmes to make progress. But the key is to use a framework to develop a balanced overall strategy, and evaluate the main elements continuously and over time. Achieving that requires having a critical mass of leaders who collectively can see the bigger picture now, envision a roadmap for the future to chart an intelligent course, and course correct regularly. This is a long-term agenda requiring commitment, careful stewardship, different perspectives, trust, and the building of knowledge and experience over time. It is also almost completely at odds with much current policymaking which is short term, reactive and demands hard results. Many countries are making progress. But the rapid introduction of new types of care during the COVID 19 pandemic, such as online and digital, the use of new technologies which could soon revolutionalise the way care is delivered, experienced and evaluated, and the huge pressures on spending on health care in future mean we will have to do better. Achieving system-wide quality of care requires having a critical mass of leaders who collectively can see the bigger picture now, envision a roadmap for the future to chart a balanced intelligent course. For the Israeli health system, the recent IJHPR article by Dreiher et al. will help, but it will be important, in the future, to analyse how Israel measures up on the framework outlined above. This ideally would be supplemented with a survey of key leaders for their assessment, and both would be a regular (say 5 yearly) exercise and would help inform future strategies.

Introduction

Most governments in developed countries want to ensure their populations have accessible, high quality, affordable health care. Building blocks for achieving this objective include providing the population some form of universal coverage of comprehensive benefits, investments allowing a decent level of quality of care to be provided, and regulating care providers, in particular the medical profession.

As good quality care does not necessarily flow from these basic ingredients, most countries have developed approaches to try to ensure it. Put simply, at one end of the spectrum are those that largely seek to mitigate the worst safety risks to health, perhaps in response to significant and well publicised lapses in quality. In the middle are an extensive range of initiatives that seek to improve care each in specific high priority areas. And at the other end are countries with a comprehensive and coherent strategy comprised of multiple approaches. Many countries aspire to the latter but are in the middle part of the spectrum. The ability to design a comprehensive strategy is difficult, but the ability to deliver it is more so, given the historical context, assets and power structures within countries to make or break progress. Some countries lack the ability to make needed changes, as power over different levers is widely distributed across different parties or different levels of the system – so agreeing and implementing a national strategy is possible but considerably more difficult.

It is refreshing when occasionally, as in Dreiher et al’s report with respect to the health care system in Israel [ 1 ], there is an attempt to lay out the key approaches used in a particular health care system to improve quality and assess progress. The feat is exceptionally challenging because quality of care is a slippery multifaceted concept and difficult to measure. And initiatives cover a multitude of dimensions, from regulation to measurement to financial incentives to public reporting to patient choice and more. How individual initiatives are meant to impact on quality may not be particularly clear, still less on how they might interact with others. Some initiatives may have indirect and lagged effects and may not be seen as quality initiatives at all. While direct and significant national initiatives may be well described, how they stack up as a whole is often not.

The easier job is to compare with other countries – is one country’s set of initiatives missing anything big being tried somewhere else? Are there glaring differences in outcomes? But the more difficult task is to assess whether, taken as a whole, policies in a country represent a coherent and balanced strategy. This is a tall order for any group of national leaders to assess, be they in a ministry, university, a quality institute or professionals in the health care system itself. And yet it is important to try, and keep trying, because doing so gives the best chance to make progress.

Concepts to consider in developing a coherent strategy

One way forward is to identify some basic concepts within a strategy, before categorising policies under them to assess balance, identify gaps, and point to where efforts should best be directed. Here I draw heavily on the work by Sutherland and Leatherman [ 2 , 3 ] Molloy et al. [ 4 ], Darzi [ 5 ] and others for the NHS in England. As in other countries, in England there have been several attempts to produce an overall strategy for quality of care in the National Health Service, seen most recently in the policy High Quality Care for All led by Lord Ara Darzi, published in 2008, which attempted to put quality at the centre of policymaking [ 5 ].

The obvious first step is to be clear about what is meant by quality of care and which are the objectives to achieve in any strategy. Many countries use the Institute of Medicine’s (IOM’s) definition of six domains: safety, effectiveness, patient-centredness, timeliness, efficiency and equity (equal access for equal need) [ 6 ].

The second is to consider in a strategy the balance of three core functions in achieving high quality in any industry, as outlined in the Juran trilogy: planning; improvement; control. In the context of health care this means effective strategic planning for quality at national level; support for organisations and professionals to improve care (for example using quality improvement techniques [ 7 ]); and control mechanisms to ensure progress and mitigate risks (including regulation and inspection, and also accountability through for example management and use of metrics). These three core functions are clearly linked, and Juran thought it important not to rely on any single one. For example a country heavily relying on regulation and inspection, might drive out professional motivation to improve care, or perversely encourage behaviour which may reduce quality.

The third is to use a framework to classify and organize quality-related activity to spot potential gaps or weaknesses in a national strategy, as modified [ 4 ] from High Quality Health care for All, as shown in Table  1 .

A practical strategic framework for improving quality

Source: Molloy A, Martin S, Gardner T, Leatherman S. A Clear Road Ahead. The Health Foundation, 2016

The fourth is in any strategy to pay attention to building capacity to improve quality at different levels in a country, for example at different geopolitical or administrative levels or institutions (providers or professional membership institutions for example). The aim here is to ensure that capability to improve quality and ‘ownership’ is developed at each level, and that there is synergy of activities at each level.

In a thoughtful essay comparing quality strategies in the UK and US, Ferlie and Shortell [ 8 ] describe four levels as being those operating at: individual level (such as staff education); group or team level (such as team development and pathway redesign); organisation level (such as approach to quality improvement and assurance); and larger system level (such as regulation, and public reporting of performance and outcomes).

Molloy et al [ 4 ] have a slightly different approach to categorising the multiple levels where action is needed to improve quality, illustrated in the pyramid in Fig.  1 .

Multi-level model for building capacity for a national quality strategy. Source: Molloy A, Martin S, Gardner T, Leatherman S. A Clear Road Ahead. The Health Foundation, 2016

In the pyramid the four levels refer broadly to the following:

• national – policy formulation, resourcing, infrastructure and accountability to the public
• regional/local – translating national policy into the local context, macro-management and monitoring
• institutional – good governance, competent operational management and continuous quality improvement
• individual – this is the level of encounter between patients and health professionals where the key attributes of quality must be actualised through individual behaviours.

The fifth concept (adapted from Leatherman and Sutherland) is to consider initiatives according to who or what is their intended target – people individually or collectively involved in health care delivery, or organisations at national, regional and local level that form part of the health system. Given the myriad of initiatives, some only indirectly targeting quality, it is important for any strategy to define the scope of what might be included. For example, to what extent is, say, criteria for capital investment important for improving quality, or initiatives to improve coding of data used to measure quality?

Putting it all together

In 2016 a comprehensive independent assessment of the main approaches to improve the quality of care in the NHS in England using these five concepts was published [ 4 ]. In brief, the findings revealed a very large number of national initiatives directly to improve quality (179 announced by the government alone over the previous 4 years), many in response to hospital-based lapses in care and heavily focused on patient safety (70% of initiatives). Given this, many were skewed towards Juran’s ‘control’ (regulation and reporting metrics, such as the introduction of national chief inspectors of care and a publicly reported system for rating the quality of primary, social and hospital care) rather than ‘improvement’ (supporting clinicians for example by developing quality improvement skills). The government initiatives, and many more (for example coming from national public agencies), were aimed at all levels of the pyramid shown in Fig.  1 .

More initiatives were targeted on ‘system’ and patients and the public, and far fewer on the clinical staff delivering care, yet an accompanying survey of national leaders showed workforce-focused initiatives were thought to be among the ‘best bets’ for protecting and enhancing quality. A significant step forward was the introduction of relicensure of physicians (known in the UK as ‘revalidation’) every 5 years by the General Medical Council in 2012 ( https://www.gmc-uk.org/registration-and-licensing/managing-your-registration/revalidation ), linked to a formal annual appraisal.

The evidence supporting the design and introduction of initiatives was frequently weak or absent, and it was also not always clear the extent of consensus among leaders on these when evidence ran short. There were examples however when a conscious effort had been made by government to press the rationale for, gather and challenge key stakeholder views to find a way forward when evidence was incomplete, for example in the work on whether to introduce a controversial national system of ratings of providers in health and social care [ 9 ].

Implementation and evaluation

Clearly whatever the ultimately designed strategy, what is implementable and when, involves a complex set of choices, depending in part on context (what is possible) as well as a selection of priorities. But given the dynamic interplay between different elements of a quality strategy when being implemented, and the length of time to show impact, monitoring progress and formal evaluation of impact is key. The assessment of quality initiatives in the NHS in England showed that accountability for their implementation (as opposed to accountability for other managerial and clinical must-dos) and monitoring was not strong. Many initiatives were introduced at different times and overlapped in what has been described elsewhere as a ‘policy thicket’ [ 10 ]. Overall, in one-third of initiatives implementation was found to be monitored although only the biggest, high profile and national initiatives were both monitored and formally evaluated. The long lag time in implementation meant often new initiatives were overlain on older ones before their effect could be seen. The fundamental point here, too often repeated, is the importance of monitoring implementation, the need to have a stronger system of independent evaluation, and to design a system where enough people see this information to modify the course of implementation or the overall strategy.

Building a long-term commitment

Clearly achieving high quality care is highly complex, and a moving target. Factors that will help progress include clarity and balance in elements of a multi-level strategy, wise choice of do-able initiatives, investment, competent and well-monitored implementation, solid evaluation and patience in the pace of progress. As Ferlie and Shortel noted in their analysis of quality strategies in the UK and US ‘efforts to date relied on ‘relatively narrow single-level programmatic strategies’ and that ‘well intentioned efforts will fail to realise their potential unless both policymakers and practitioners consider and implement a more comprehensive multi-level approach to change’ [ 8 ].

Achieving that surely requires having a critical mass of leaders who collectively can see the bigger picture now, envision a roadmap for the future to chart a balanced intelligent course, and course correct regularly. Dreiher et al’s contribution will help, but it will be important, in the future, to analyse how Israel measures up on a systematic framework such as the one outlined above. This ideally would be supplemented with a survey of key leaders for their assessment, and both would be a regular (say 5 yearly) exercise and would help inform future strategies.

It is worth emphasising that as quality of care will never be fully measurable, particularly the more intangible human aspects of care like empathy, kindness and understanding, any strategy must also nurture core professional values to do what is in the best interests of their patients. This is a long-term agenda in of itself requiring commitment, careful stewardship, different perspectives, trust, and the building of knowledge and experience over time. It is also almost completely at odds with much current policymaking which is short term, reactive and demands hard results.

Countries have and continue to make huge progress, as clearly demonstrated by Dreiher et al in Israel [ 1 ], in England [ 2 , 4 ] and internationally by OECD [ 11 ] among others. But the question on the table now is can we move faster? The agenda is more urgent given the rapid introduction of new types of care during the COVID 19 pandemic, such as online and digital, the crowding on the horizon of new technologies which could soon revolutionalise the way care is delivered, experienced and evaluated, the huge pressures on spending on health care by governments, employers and individuals, and the changing burden of risk and ill health in the population. We will have to do better.

Dr. Jennifer Dixon is the chief executive of The Health Foundation, an independent philanthropic foundation based in London. She originally trained in medicine, is a specialist in public health and health policy research, and has published widely.

Acknowledgements

Author’s contributions.

The author(s) read and approved the final manuscript.

Availability of data and materials

Ethics approval and consent to participate, consent for publication.

fully given by the author.

Competing interests

none. The Health Foundation funded some of the research cited in the paper (the paper by Molloy et al).

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Service quality in the healthcare sector: a systematic review and meta-analysis

LBS Journal of Management & Research

ISSN : 0972-8031

Article publication date: 16 January 2023

Issue publication date: 4 September 2023

The purpose of this study is to summarize the available pool of literature on service quality to identify different dimensions of service quality in the healthcare industry and understand how it is measured. The study attempts to explore the research gaps in the literature about different service quality dimensions and patient satisfaction.

Design/methodology/approach

A systematic literature review process was followed to achieve the objectives of the study. Various inclusion and exclusion criteria were used to select relevant research articles from 2000–2020 for the study, and a total of 100 research articles were selected.

The study identified 41 different dimensions of healthcare service quality measurement and classified these dimensions into four categories, namely servicescape, personnel, hospital administration and patients. It can be concluded that SERVQUAL is the most widely used service quality measurement tool.

Originality/value

The study identified that a majority of the researchers deduced a positive relationship between SERVQUAL dimensions and the quality of healthcare services. The findings of study will assist hospital executives in formulating effective strategies to ensure that patients receive superior quality healthcare services.

• Healthcare sector
• Service quality
• Systematic review

Darzi, M.A. , Islam, S.B. , Khursheed, S.O. and Bhat, S.A. (2023), "Service quality in the healthcare sector: a systematic review and meta-analysis", LBS Journal of Management & Research , Vol. 21 No. 1, pp. 13-29. https://doi.org/10.1108/LBSJMR-06-2022-0025

Emerald Publishing Limited

Copyright © 2022, Mushtaq Ahmad Darzi, Sheikh Basharul Islam, Syed Owais Khursheed and Suhail Ahmad Bhat

Published in LBS Journal of Management & Research . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and no commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

Introduction

The quality of healthcare services has long been a subject of concern for both private and public healthcare service providers across the globe. According to Senic and Marinkovic (2013) , integrity and competitiveness of a nation's healthcare structure are gauged by the quality of healthcare services rendered. Indian National Health Policy 2017 envisions that everyone should have access to high-quality healthcare without facing financial suffering ( MoHFW, 2017 ). Adherence to quality standards and improved quality design results in a better-perceived value, which leads to better prices, better income and greater profitability ( Zeithaml, 2000 ). Customers of the healthcare industry in developing countries are becoming more and more aware of their right to quality healthcare. Consequently, delivering high-quality service by healthcare service providers is gaining momentum ( Abuosi & Atinga, 2013 ). According to Yee, Yeung, and Cheng (2010) , healthcare service providers need to provide high-quality services to sustain the trustworthiness of patients. Demand for superior service quality is growing due to an increase in the per capita income of customers and increased aspirations of the customer ( Singh & Prasher, 2019 ). Also, as a result of competition from private healthcare service providers, public care providers are facing pressing demand for delivering high-quality services ( Zarei, Arab, Froushani, Rashidian, & Ghazi-Tabatabaei, 2012 ).

Mosadeghrad (2014, p. 78) defined healthcare quality as “ consistently delighting the patient by providing efficacious, effective and efficient healthcare services according to the latest clinical guidelines and standards, which meet the patient ' s needs and satisfies providers ”. Ovretveit (2009, p. 4) defines quality care as the “ p rovision of care that exceeds patient expectations and achieves the highest possible clinical outcomes with the resources available ”. Parasuraman, Zeithaml and Berry (1985) described service quality as the gap between a customer's expectations of service and the customer's perception of service after the service is rendered. When perception exceeds expectations, the customer will be satisfied ( Kalaja, Myshketa, & Scalera, 2016 ). Several studies have confirmed that customer expectations of service are much higher than the customer perception of services rendered by both public and private sector institutions ( Andaleeb, Siddiqui, & Khandakar, 2007 ; Zarei et al. , 2012 ; Manulik, Rosińczuk, & Karniej, 2016 ). A firm provides quality service when its services at least meet or exceed the expectations of the customer ( Owusu-Frimpong, Nwankwo, & Dason, 2010 ). Service quality evaluation varies from the service provider's and service receiver's point of view. Service delivery professionals evaluate service based on delivery and design aspects, while receivers of service evaluate it based on their overall perception after consuming the service ( Brown & Swartz, 1989 ). Traditionally healthcare quality was judged based on some objective criteria such as mortality rate, morbidity rate, infant mortality rate, etc. However, as time passes, the structure of the industry changed, and the role of patients in deciding quality has been given more and more consideration ( Dagger, Sweeney, & Johnson, 2007 ). To survive in the modern competitive markets, it has become of utmost importance for service providers to understand the needs and expectations of customers. They must deliver what the customer is expected instead of what they feel is important for a customer to maintain the business demand ( Singh & Prasher, 2019 ). Kotler and Keller (2006) suggest that in the consumer-oriented healthcare market where healthcare delivery is commodified and patient-led, the patient should be the judge of service quality. Hence, to provide better quality services, healthcare service providers need to identify the main dimensions of service quality in healthcare and focus on those dimensions rated more important by the patients ( Singh & Prasher, 2019 ).

Studies on healthcare service quality have been conducted in a variety of settings worldwide, namely Albania ( Kalaja et al. , 2016 ), Australia ( Copnell et al. , 2009 ; Dagger et al. , 2007 ; Levesque & Sutherland, 2020 ), Bangladesh ( Andaleeb et al. , 2007 ), China ( Li et al. , 2015 ; Wu, Li, & Li, 2016 ), Denmark ( Engelbrecht, 2005 ; Groene, Skau, & Frølich, 2008 ), Ghana ( Abuosi & Atinga, 2013 ; Agyapong, Afi, & Kwateng, 2018 ), India ( Chahal, 2008 ; Aagja & Garg, 2010 ; Chahal & Kumari, 2010 ; Gupta & Rokade, 2016 ; Singh & Prasher, 2019 ; Upadhyai, Jain, Roy, & Pant, 2019 ; Jog et al. , 2020 ), Iran ( Goshtasebi et al. , 2009 ; Mohammadkarim, Jamil, Pejman, Seyyed, & Mostafa, 2011 ; Mosadeghrad, 2014 ), Malaysia ( Ahmad & Sungip, 2008 ; Hasan, Ilias, Rahman, & Razak, 2009 ), Pakistan ( Irfan & Ijaz, 2011 ; Shabbir, Malik, & Malik, 2016 ; Fatima, Malik, & Shabbir, 2018 ; Dhahri, Iqbal, & Khan, 2020 ), Turkey ( Beyan & Baykal, 2012 ) and USA ( Lee, 2003 ; Hegji & Self, 2009 ; Mustafa, Yang, Mortezavi, Vadamalai, & Ramsey, 2020 ; Thompson, Shen, & Lee, 2020 ). The purpose of this paper is to investigate and summarize the available literature on healthcare service quality to understand what constitutes healthcare service quality and its principal dimensions and also to highlight the prominent research gaps that will provide direction for future research.

Methodology

The study followed a systematic review process to obtain research articles relevant to the research problem understudy. The systematic review process is a structured way of identifying, evaluating and interpreting the available literature related to any particular area ( Kamboj & Rahman, 2015 ). A systematic literature review is a two-step process. First, defining the criteria for inclusion of articles and second, identifying databases and research studies ( McLean & Antony, 2014 ).

Inclusion criteria

Papers published during 2000–2020 were considered for the study. This was done by applying a custom range filter. The reason for selecting the above mention time frame is the most recent two decades were selected for article search.

Research articles related to healthcare service quality were included in the review process. The criterion was adopted in line with the primary objective of the review process.

Empirical and review articles published in peer-reviewed journals were considered.

Only papers in the English language were included.

Database and article selection

The literature search was conducted in the autumn of 2021. The databases selected for the literature search included Emerald, Elsevier, Sage, Taylor and Francis and Google Scholar. Filters such as custom range and sort by relevance were applied to restrict the search results to keywords. The systematic review process is presented in Figure 1 . In stage 1 of the review process, the literature was searched using the keywords such as healthcare, healthcare services, service quality and SERVQUAL. The search obtained 209 research articles. The research papers were selected based on relevance to the topic understudy and the popularity of the articles. Researchers such as Beaulieu (2015) argued that the popularity of journal articles with above 10 citations are considered in top 24% of the highest cited articles, and articles that receive 100 citations are considered among 1.8% of the most popular articles across the globe, which makes the current study a worth addition to the existing body of literature. In stage 2, the screening of articles was then conducted first based on title and abstract and then based on inclusion criteria. Screening of articles based on the title and abstract resulted in the exclusion of 63 research articles, and 146 articles were moved to the next level of screening.

Then articles were screened by applying inclusion criteria to exclude articles that do not fulfill the above-stated criteria ( Kamboj & Rahman, 2015 ). This screening obtained 100 research articles that were finally considered for review, and the rest of the articles (46) were excluded from the study. Finally, in stage 3 of the review process, the study provides a summary (publication trend, journal-wise distribution, methodology that includes sampling method and data analysis tools used and key findings) of the 100 articles included in the review.

Common characteristics of reviewed articles

Classification of articles by research type and hospital setting

Table 1 displays the classification of research articles based on research type and hospital setting. The research type describes the nature of the research and yields that a maximum number of articles were quantitative studies (62 articles) followed by qualitative studies (15 articles) and only 07 studies that were both qualitative and quantitative. A few review articles (14 articles) were also considered during the process. The results of the review substantiate that there is a need of conducting qualitative research that can provide an in-depth understanding of how various service quality dimensions affect the perceived quality of care among patients and the treatment satisfaction level. Qualitative studies can also provide insights into the priorities of patients while receiving medical services.

The classification based on hospital setting yields more than 77 articles that have purposively chosen a specific hospital setting and the rest have collected data from respondents in general. Out of 77 articles, 49% of research studies were conducted in a public hospital setting, and 25% were conducted in a private hospital setting. Around 26% of research were conducted in both public and private hospital settings. The direct comparison of healthcare services and perceived service quality among patients was observed as the main motivator in choosing both hospital settings ( Ovretveit, 2000 ; Mostafa, 2005 ; Taner & Antony, 2006 ; Andaleeb et al. , 2007 ; Owusu-Frimpong et al. , 2010 ; Manulik et al. , 2016 ; Dhahri et al. , 2020 ).

Data analysis tool

Figure 2 presents the frequency of various data analysis tools used by researchers to obtain meaningful results. The examination of articles selected for review revealed that 15 different data analysis techniques have been utilized in the past two decades. Descriptive statistics (29 articles) including mean and standard deviation has been the most frequently applied technique in healthcare service quality research followed by t -test (18 articles). It was also found that both techniques have been applied in combination because service quality can be obtained by ascertaining the difference between service perception and service expectation of patients using the SERVQUAL model ( Ahmad & Sungip, 2008 ; Irfan & Ijaz, 2011 ; Zarei, Daneshkohan, Khabiri, & Arab, 2015 ; Torabipour, Sayaf, Salehi, & Ghasemzadeh, 2016 ). Other major techniques preferred by researchers include correlation (17 articles), regression (17 articles), systematic literature review (12 articles) and ANOVA (11 articles). However, only 20 articles in total have applied structural equation modeling (SEM), MANOVA, content analysis, chi-square test, Shapiro–Wilk test, Mann–Whitney U-test, Kruskal–Wallis tests and Wilcoxon test, making them among the least preferred techniques in healthcare service quality research.

Sampling method

Articles selected for review depict that both nonprobability and probability sampling have been applied to study healthcare service quality and patient satisfaction. The articles have adopted 08 different sampling methods in addition to the complete enumeration (Census), which was employed for 03 articles. From nonprobability sampling techniques, convenience sampling (18 articles) is the most widely used sampling technique, and simple random sampling (19 articles) is the most frequently applied sampling method from the probability sampling group. Cluster sampling was found to be the least applied sampling technique among probability sampling methods because most of the studies were focused on specific regions with a limited geographical area. Targeting a smaller geographical area or specific site increases the feasibility of reaching out to sampling units because of the limited population spread. Therefore, when further segregation based on the geographical area seems impossible, the applicability of cluster sampling becomes impractical ( Cameron & Miller, 2015 ).

Findings and discussion

The systematic review of 100 articles has fetched several important findings in terms of measures of healthcare service quality and the theories applied in examining healthcare service quality.

Measures of healthcare service quality

Healthcare service quality, because of its intangible character and subjective nature, is difficult to define and measure. The comprehensive study of research articles about healthcare service quality illustrated that service quality in healthcare is examined by using different measures primarily related to servicescape, personnel, hospital administration and patients. The study has identified 41 distinctive measures of healthcare service quality ( Table 2 ). The factors commonly used to measure the quality of servicescape are identified as physical environmental quality, diagnostic aspect of care, resources and capacity, tangibility, financial and physical access to care and access ( Herstein & Gamliel, 2006 ; Ahmad & Sungip, 2008 ; Sharma & Narang, 2011 ; Simou, Pliatsika, Koutsogeorgou, & Roumeliotou, 2014 ; Marzban, Najafi, Etedal, Moradi, & Rajaee, 2015 ). Among the mentioned dimensions of servicescape, utilization has been less studied in the past. Future researchers can explore these areas because often in healthcare centers, the infrastructure capacity is overutilized or underutilized, which hinders the delivery of healthcare services. The determinants mostly employed to determine the quality of human resources (personnel) include healthcare personnel conduct, efficacy, efficiency, empathy, interaction quality, physician and staff performance, provider competency/performance, reliability, responsiveness, timeliness and trustworthiness ( Chahal & Kumari, 2012 ; Manulik et al. , 2016 ; Singh & Prasher, 2019 ). Some of the fewer studied factors under personnel characteristics include quality of patient-staff communication, outcome quality, professional quality, provider motivation and satisfaction encounters. These factors can influence the service quality of healthcare centers but are less researched in the past. The factors concerning quality aspects of hospital management/administration include admission, assurance, healthcare delivery system, infection rate, standard operating procedures, leadership and management and medical service ( Ovretveit, 2000 ; Herstein & Gamliel, 2006 ; Taner & Antony, 2006 ; Aagja & Garg, 2010 ; Irfan & Ijaz, 2011 ; Gupta & Rokade, 2016 ; Torabipour et al. , 2016 ). Among the determinants of hospital administration availability of doctors and paramedical staff, discharge mechanism of patients, documentation procedure in the hospital, social responsibility consciousness among the staff, management quality and drug availability in the hospital are some of the key factors that influence the service encounters between staff and patients. These determinants are less studied in the literature. Future researchers can build their research on these less studied variables. Lastly, the factors affecting service quality in terms of patient characteristics include patient satisfaction, the average length of stay, patient cooperation, patient quality/illness and patient socio-demographic variables ( Ovretveit, 2000 ; Mosadeghrad, 2014 ; Gupta & Rokade, 2016 ). It was observed that most of the service quality determinants identified can be summarized under the major 05 SERVQUAL determinants.

Theories applied to healthcare service quality

The list of popular theories that have been applied to examine healthcare service quality across the globe is presented in Figure 3 . A total of 11 different theories were identified during the review process. Less than 50% of papers identified for review have adopted one or the other service quality measurement framework and around 70% (32 research articles) among them have applied the SERVQUAL framework by Parasuraman, Zeithaml, and Berry (1988) . This makes SERVQUAL the mostly widely applied service quality framework. The other theories that have been utilized in the recent decade to examine the service quality of healthcare system include total quality management, fuzzy analytical hierarchy process, service performance model and health monitoring indicators system: health map ( Chahal & Kumari, 2012 ; Ramez, 2012 ; Zarei et al. , 2015 ; Amole, Oyatoye, & Adebiyi, 2015 ; Singh & Prasher, 2019 ; Zaid, Arqawi, Mwais, Al Shobaki, & Abu-Naser, 2020 ). The elements used to measure the perceived service quality of hospitals under different theories other than the SERVQUAL model can largely be classified under five SERVQUAL dimensions. However, outcome quality, process quality, administrative/management quality, utilization, technical quality and trustworthiness are identified as additional new dimensions being used to examine the service quality of hospitals ( Ovretveit, 2000 ; Chahal & Kumari, 2010 ; Simou et al. , 2014 ; Singh & Prasher, 2019 ; Zaid et al. , 2020 ).

Limitations and future research directions

The current study has some shortcomings which open up opportunities for future research. The present study followed a systematic review process to obtain research articles from different databases, like Emerald, Elsevier, Sage, Taylor and Francis and Google Scholar. Several inclusion criteria were applied, and only those full-text articles that are available in the English language were selected for the review. Therefore, there is the possibility of excluding some articles that are not available in these databases or are available in some other languages. Further, most of the studies selected for review were from developed nations. There is a lot of difference between the healthcare system of developed and developing nations. Thus, the findings of the present study cannot be generalized to developing nations without additional validation ( Kamboj & Rahman, 2015 ). Therefore, there is a need of carrying out empirical research in developing nations in this area.

The review of available literature has revealed that there are a large number of measurement tools available for the assessment of service quality in healthcare. However, the majority of these measurement instruments developed by the researchers assess quality from patients' perspectives and do not take into consideration service providers' perspectives. The technical aspect of service quality cannot be assessed by patients alone ( Upadhyai et al. , 2019 ). For a better understanding of service quality evaluation and satisfaction of service encounters, both service providers' and receivers' perspectives should be taken into consideration ( Brown & Swartz, 1989 ). Therefore, future researchers need to explore the knowledge gap (gap 1) of the SERVQUAL gap given proposed by Parasuraman et al. (1985) .

Practical implications

The study has attempted to identify and describe all dimensions and measurement tools relevant to healthcare service quality in light of the available literature. The study provides a thorough description of a vast number of investigations and reflects their outcomes. This research could help understand the diverse conceptualizations of service quality in healthcare compared to other types of services. The study also identified various gaps in the available literature that could be answered by future research.

The results of this study will help hospital executives in understanding the various constituents of quality and their impact on patient satisfaction. This will help hospital managers in formulating strategies that will improve patient satisfaction and ultimately improving the overall performance of hospitals. The study also highlighted the factors in which patients weigh more, thereby helping hospital managers to set priorities and help in proper resource utilization.

The current study presents an in-depth review of the literature concerning service quality and patient satisfaction in the healthcare industry. Service quality is a subjective measure and hence tends to vary from place to place and from patient to patient based on preference. The study has identified different measures that have been utilized to date to examine service quality or quality gaps in various hospital settings. Most of the studies selected for review have employed SERVQUAL dimensions of quality as service quality parameters. Service quality in the majority of the studies was established based on a difference between perceived and expected scores of service quality determinants, and the t -test was identified as the widely used statistical measure for testing its significance. In addition to this, various measures to determine patient satisfaction were identified and classified based on extra 3Ps of services marketing, namely physical evidence, people and process. The maximum number and most weighted factors affecting patient satisfaction are related to human resources actively engaged in providing medical services. It was observed that SERVQUAL determinants are popularly being used as a tool to determine the level of satisfaction among patients. All SERVQUAL determinants were found to have a significant positive relationship with patient satisfaction. Finally, 11 popular theories were identified among which SERVQUAL is widely applied.

Systematic literature review process

Theories applied in healthcare service quality

Aagja , J. P. , & Garg , R. ( 2010 ). Measuring perceived service quality for public hospitals (PubHosQual) in the Indian context . International Journal of Pharmaceutical and Healthcare Marketing , 4 ( 1 ), 60 – 83 .

Abu-Kharmeh , S. S. ( 2012 ). Evaluating the quality of health care services in the Hashemite Kingdom of Jordan . International Journal of Business and Management , 7 ( 4 ), 195 – 205 .

Abuosi , A. A. , & Atinga , R. A. ( 2013 ). Service quality in healthcare institutions: Establishing the gaps for policy action . International Journal of Health Care Quality Assurance , 26 ( 5 ), 481 – 492 .

Adebayo , E. T. , Adesina , B. A. , Ahaji , L. E. , & Hussein , N. A. ( 2014 ). Patient assessment of the quality of dental care services in a Nigerian hospital . Journal of Hospital Administration , 3 ( 6 ), 20 – 28 .

Aghamolaei , T. , Eftekhaari , T. E. , Rafati , S. , Kahnouji , K. , Ahangari , S. , Shahrzad , M. E. , & Hoseini , S. H. ( 2014 ). Service quality assessment of a referral hospital in southern Iran with SERVQUAL technique: Patients' perspective . BMC Health Services Research , 14 ( 1 ), 1 – 5 .

Agyapong , A. , Afi , J. D. , & Kwateng , K. O. ( 2018 ). Examining the effect of perceived service quality of health care delivery in Ghana on behavioural intentions of patients: The mediating role of customer satisfaction . International Journal of Healthcare Management , 11 ( 4 ), 276 – 288 .

Ahmad , A. , & Sungip , Z. ( 2008 ). An assessment on service quality in Malaysia insurance industry . Communications of the IBIMA , 1 , 13 – 26 . Available from: https://www.airitilibrary.com/Publication/alDetailedMesh?docid=19437765-200802-201406040030-201406040030-13-26

Ahmed , R. , & Samreen , H. ( 2011 ). Assessing the Service quality of some selected hospitals in Karachi based on the SERVQUAL model . Pakistan Business Review , 32 ( 5 ), 266 – 314 .

Al Fraihi , K. J. , Famco , D. , & Latif , S. A. ( 2016 ). Evaluation of outpatient service quality in Eastern Saudi Arabia: Patient's expectations and perceptions . Saudi Medical Journal , 37 ( 4 ), 420 – 428 .

Amole , B. B. , Oyatoye , E. O. , & Adebiyi , S. O. ( 2015 ). Prioritization of service quality influences on patients satisfaction using analytic hierarchy process: The Nigeria experience . Economics and Applied Informatics , 3 , 25 – 35 . Available from: https://www.ceeol.com/search/article-detail?id=530660

Andaleeb , S. S. , Siddiqui , N. , & Khandakar , S. ( 2007 ). Patient satisfaction with health services in Bangladesh . Health Policy and Planning , 22 ( 4 ), 263 – 273 .

Andrews , M. A. , Areekal , B. , Rajesh , K. R. , Krishnan , J. , Suryakala , R. , Krishnan , B. , & Santhosh , P. V. ( 2020 ). First confirmed case of COVID-19 infection in India: A case report . The Indian Journal of Medical Research , 151 ( 5 ), 490 – 492 .

Bahadori , M. , Raadabadi , M. , Jamebozorgi , M. H. , Salesi , M. , & Ravangard , R. ( 2014 ). Measuring the quality of provided services for patients with chronic kidney disease . Nephro-urology Monthly , 6 ( 5 ), e21810 .

Beaulieu , L. ( 2015 ). How many citations are actually a lot of citations? . Available from: https://lucbeaulieu.com/2015/11/19/how-many-citations-are-actually-a-lot-of-citations/ (accessed on: 11 December 2021) .

Beyan , O. D. , & Baykal , N. ( 2012 ). A knowledge-based search tool for performance measures in health care systems . Journal of Medical Systems , 36 ( 1 ), 201 – 221 .

Boshoff , C. , & Gray , B. ( 2004 ). The relationship between service quality, customer satisfaction and buying intentions in the private hospital industry . South African Journal of Business Management , 35 ( 4 ), 27 – 37 .

Brady , M. K. , & Cronin , J. J. ( 2001 ). Some new thoughts on conceptualizing perceived service quality: A hierarchical approach . Journal of Marketing , 65 , 34 – 49 .

Brown , S. W. , & Swartz , T. A. ( 1989 ). A gap analysis of professional service quality . The Journal of Marketing , 53 ( 2 ), 92 – 98 .

Cameron , A. C. , & Miller , D. L. ( 2015 ). A practitioner’s guide to cluster-robust inference . Journal of Human Resources , 50 ( 2 ), 317 – 372 .

Carini , E. , Gabutti , I. , Frisicale , E. M. , Di Pilla , A. , Pezzullo , A. M. , de Waure , C. , & Specchia , M. L. ( 2020 ). Assessing hospital performance indicators. What dimensions? Evidence from an umbrella review . BMC Health Services Research , 20 ( 1 ), 1 – 13 .

Chahal , H. ( 2008 ). Predicting patient loyalty and service quality relationship: A case study of civil hospital, Ahmedabad, India . Vision , 12 ( 4 ), 45 – 55 .

Chahal , H. , & Kumari , N. ( 2010 ). Development of multidimensional scale for healthcare service quality (HCSQ) in Indian context . Journal of Indian Business Research , 2 ( 4 ), 230 – 255 .

Chahal , H. , & Kumari , N. ( 2012 ). Service quality and performance in the public health-care sector . Health Marketing Quarterly , 29 ( 3 ), 181 – 205 .

Chahal , H. , & Mehta , S. ( 2013 ). Modeling patient satisfaction construct in the Indian health care context . International Journal of Pharmaceutical and Healthcare Marketing , 7 ( 1 ), 75 – 92 .

Chakravarty , A. ( 2011 ). Evaluation of service quality of hospital outpatient department services . Medical Journal Armed Forces India , 67 ( 3 ), 221 – 224 .

Chaudhury , N. , Hammer , J. , Knemer , M. , Muralidharan , K. , & Rogers , F. H. ( 2006 ). Missing in action: Teacher and health worker absence in developing countries . Journal of Economic Perspectives , 20 ( 1 ), 91 – 116 .

Choi , K.-S. , Lee , H. , Kim , C. , & Lee , S. ( 2005 ). The service quality dimensions and patient satisfaction relationships in South Korea: Across gender, age and type of service . Journal of Service Marketing , 19 ( 3 ), 140 – 149 .

Conly , J. , Seto , W. H. , Pittet , D. , Holmes , A. , Chu , M. , & Hunter , P. R. ( 2020 ). Use of medical face masks versus particulate respirators as a component of personal protective equipment for health care workers in the context of the COVID-19 pandemic . Antimicrobial Resistance and Infection Control , 9 ( 1 ), 1 – 7 .

Copnell , B. , Hagger , V. , Wilson , S. G. , Evans , S. M. , Sprivulis , P. C. , & Cameron , P. A. ( 2009 ). Measuring the quality of hospital care: An inventory of indicators . Internal Medicine Journal , 39 ( 6 ), 352 – 360 .

Dagger , T. S. , Sweeney , J. C. , & Johnson , L. W. ( 2007 ). A hierarchical model of health service quality: Scale development and investigation of an integrated model . Journal of Service Research , 10 ( 2 ), 123 – 142 .

De los Santos , J. A. A. , & Labrague , L. J. ( 2021 ). The impact of fear of COVID-19 on job stress, and turnover intentions of frontline nurses in the community: A cross-sectional study in the Philippines . Traumatology , 27 ( 1 ), 52 – 59 .

Dhahri , A. A. , Iqbal , M. R. , & Khan , A. F. A. ( 2020 ). A cross-sectional survey on availability of facilities to healthcare workers in Pakistan during the COVID-19 pandemic . Annals of Medicine and Surgery , 59 , 127 – 130 .

D'Souza , S. C. , & Sequeira , A. H. ( 2011 ). Application of MBNQA for service quality management and performance in healthcare organizations . International Journal of Engineering, Science and Technology , 3 ( 7 ), 73 – 88 .

Engelbrecht , S. ( 2005 ). Motivation and burnout in human service work: The case of midwifery in Denmark: Roskilde university, faculty of psychology . Philosophy and Science Studies .

Fatima , T. , Malik , S. A. , & Shabbir , A. ( 2018 ). Hospital healthcare service quality, patient satisfaction and loyalty: An investigation in context of private healthcare systems . International Journal of Quality and Reliability Management , 35 ( 6 ), 1195 – 1214 .

Gandjour , A. , Kleinschmit , F. , Littmann , V. , & Lauterbach , K. W. ( 2002 ). An evidence-based evaluation of quality and efficiency indicators . Quality Management in Healthcare , 10 ( 4 ), 41 – 52 .

Goshtasebi , A. , Vahdaninia , M. , Gorgipour , R. , Samanpour , A. , Maftoon , F. , Farzadi , F. , & Ahmadi , F. ( 2009 ). Assessing hospital performance by the pabon Lasso model . Iranian Journal of Public Health , 38 ( 2 ), 119 – 124 .

Groene , O. , Skau , J. K. , & Frølich , A. ( 2008 ). An international review of projects on hospital performance assessment . International Journal for Quality in Health Care , 20 ( 3 ), 162 – 171 .

Gupta , K. S. , & Rokade , V. ( 2016 ). Importance of quality in health care sector: A review . Journal of Health Management , 18 ( 1 ), 84 – 94 .

Gustafsson , A. , Johnson , M. D. , & Roos , I. ( 2005 ). The effects of customer satisfaction, relationship commitment dimensions, and triggers on customer retention . Journal of Marketing , 69 ( 4 ), 210 – 218 .

Haque , A. , Sarwar , A. A. I.-M. , Yasmin , F. , & Nuruzzaman , A. A. ( 2012 ). The impact of customer perceived service quality on customer satisfaction for private health centre in Malaysia: A structural equation modeling approach . Information Management and Business Review , 4 ( 5 ), 257 – 267 .

Hasan , H. F. A. , Ilias , A. , Rahman , R. A. , & Razak , M. Z. A. ( 2009 ). Service quality and student satisfaction: A case study at private higher education institutions . International Business Research , 1 ( 3 ), 163 – 175 .

Hegji , C. E. , & Self , D. R. ( 2009 ). The impact of hospital quality on profits, volume, and length of stay . Health Marketing Quarterly , 26 , 209 – 223 .

Herstein , R. , & Gamliel , E. ( 2006 ). The role of private branding in improving service quality . Managing Service Quality , 16 ( 4 ), 306 – 319 .

Herzlinger , R. E. ( 2003 ). Consumer-driven health care: Implications for providers, payers, and policy-makers . Healthplan , 44 ( 6 ), 26 – 29 .

Irfan , S. M. , & Ijaz , A. ( 2011 ). Comparison of service quality between private and public hospitals: Empirical evidences from Pakistan . Journal of Quality and Technology Management , 7 ( 1 ), 1 – 22 .

Israr , M. , Awan , N. , Jan , D. , Ahmad , N. , & Ahmad , S. ( 2016 ). Patients' perception, views and satisfaction with community health center services at mardan district of Khyber Pakhtunkhwa . American Journal of Public Health Research , 4 ( 3 ), 79 – 87 .

Iyengar , S. , & Dholakia , R. H. ( 2012 ). Access of the rural poor to primary healthcare in India . Review of Market Integration , 4 ( 1 ), 71 – 109 .

Jog , S. , Kelkar , D. , Bhat , M. , Patwardhan , S. , Godavarthy , P. , Dhundi , U. , & Bhavsar , R. ( 2020 ). Preparedness of acute care facility and a hospital for COVID-19 pandemic: What we did! . Indian Journal of Critical Care Medicine: Peer-Reviewed, Official Publication of Indian Society of Critical Care Medicine , 24 ( 6 ), 385 .

Kalaja , R. , Myshketa , R. , & Scalera , F. ( 2016 ). Service quality assessment in health care sector: The case of Durres public hospital . Procedia-Social and Behavioral Sciences , 235 , 557 – 565 .

Kamboj , S. , & Rahman , Z. ( 2015 ). Marketing capabilities and firm performance: Literature review and future research agenda . International Journal of Productivity and Performance Management , 64 ( 8 ), 1041 – 1067 .

Karydis , A. , Komboli‐Kodovazeniti , M. , Hatzigeorgiou , D. , & Panis , V. ( 2001 ). Expectations and perceptions of Greek patients regarding the quality of dental health care . International Journal for Quality in Health Care , 13 ( 5 ), 409 – 416 .

Kazemi , N. , Ehsani , P. , Abdi , F. , & Bighami , M. ( 2013 ). Measuring hospital service quality and its influence on patient satisfaction: An empirical study using structural equation modelling . Management Science Letters , 3 ( 7 ), 2125 – 2136 .

Kotler , P. , & Keller , K. ( 2006 ). Marketing management ( 12th ed. ). London : Pearson Education .

Lee , F. ( 2003 ). To build loyalty, hospitals need to exceed customer's expectation . Marketing Health Service , ( Summer ), 33 – 37 .

Levesque , J. F. , & Sutherland , K. ( 2017 ). What role does performance information play in securing improvement in healthcare? A conceptual framework for levers of change . BMJ Open , 7 ( 8 ), 1 – 9 , e014825 .

Levesque , J. F. , & Sutherland , K. ( 2020 ). Combining patient, clinical and system perspectives in assessing performance in healthcare: An integrated measurement framework . BMC Health Services Research , 20 ( 1 ), 1 – 14 .

Li , M. , Lowrie , D. B. , Huang , C. Y. , Lu , X. C. , Zhu , Y. C. , Wu , X. H. … Lu , H. Z. ( 2015 ). Evaluating patients' perception of service quality at hospitals in nine Chinese cities by use of the ServQual scale . Asian Pacific Journal of Tropical Biomedicine , 5 ( 6 ), 497 – 504 .

Lim , J. , Lim , K. , Heinrichs , J. , Al-Aali , K. , Aamir , A. , & Qureshi , M. ( 2018 ). The role of hospital service quality in developing the satisfaction of the patients and hospital performance . Management Science Letters , 8 ( 12 ), 1353 – 1362 .

Liu , J. W. , Lu , S. N. , Chen , S. S. , Yang , K. D. , Lin , M. C. , Wu , C. C. … Chen , C. L. ( 2006 ). Epidemiologic study and containment of a nosocomial outbreak of severe acute respiratory syndrome in a medical center in Kaohsiung, Taiwan . Infection Control and Hospital Epidemiology , 27 ( 5 ), 466 – 472 .

Loiacono , E. T. , Watson , R. T. , & Goodhue , D. L. ( 2007 ). WebQual: An instrument for consumer evaluation of web sites . International Journal of Electronic Commerce , 11 ( 3 ), 51 – 87 .

Mahajan , N. N. , Pednekar , R. , Patil , S. R. , Subramanyam , A. A. , Rathi , S. , Malik , S. … Srivastava , S.A. ( 2020 ). Preparedness, administrative challenges for establishing obstetric services, and experience of delivering over 400 women at a tertiary care COVID‐19 hospital in India . International Journal of Gynecology and Obstetrics , 151 ( 2 ), 188 – 196 .

Manulik , S. , Rosińczuk , J. , & Karniej , P. ( 2016 ). Evaluation of health care service quality in Poland with the use of SERVQUAL method at the specialist ambulatory health care center . Patient Preference and Adherence , 10 , 1435 – 1442 .

Marzban , S. , Najafi , M. , Etedal , M. G. , Moradi , S. , & Rajaee , R. ( 2015 ). The evaluation of outpatient quality services in physiotherapy in the teaching health centers of Shahid Beheshti University based on SERVQUAL tools . European Journal of Biology and Medical Science Research , 3 ( 3 ), 46 – 53 .

McLean , R. , & Antony , J. ( 2014 ). Why continuous improvement initiatives fail in manufacturing environments? A systematic review of the evidence . International Journal of Productivity and Performance Management , 63 ( 3 ), 370 – 376 .

Ministry of Health and Family Welfare (MoHFW) ( 2017 ). National health policy 2017 . Available from: https://main.mohfw.gov.in/documents/policy ( accessed 15 January 2022 ).

Mohammadkarim , B. , Jamil , S. , Pejman , H. , Seyyed , M. H. , & Mostafa , N. ( 2011 ). Combining multiple indicators to assess hospital performance in Iran using the Pabon Lasso Model . The Australasian Medical Journal , 4 ( 4 ), 175 – 179 .

Mosadeghrad , A. M. ( 2014 ). Factors influencing healthcare service quality . International Journal of Health Policy and Management , 3 ( 2 ), 77 – 89 .

Mostafa , M. M. ( 2005 ). An empirical study of patient's expectations and satisfactions in Egyptian hospitals . International Journal of Health Care Quality Assurance , 18 ( 7 ), 516 – 532 .

Murti , A. , Deshpande , A. , & Srivastava , N. ( 2013 ). Service quality, customer (patient) satisfaction and behavioural intention in health care services: Exploring the Indian perspective . Journal of Health Management , 15 ( 1 ), 29 – 44 .

Mustafa , S. S. , Yang , L. , Mortezavi , M. , Vadamalai , K. , & Ramsey , A. ( 2020 ). Patient satisfaction with telemedicine encounters in an allergy and immunology practice during the coronavirus disease 2019 pandemic . Annals of Allergy, Asthma and Immunology , 125 ( 4 ), 478 – 479 .

Nasiripour , A. A. , Kazemi , M. A. A. , & Izadi , A. ( 2012 ). Designing a hospital performance assessment model based on balanced scorecard . HealthMED , 6 ( 9 ), 2983 – 2989 .

Ovretveit , J. ( 2000 ). Total quality management in European healthcare . International Journal of Health Care Quality Assurance , 13 ( 2 ), 74 – 80 .

Ovretveit , J. ( 2009 ). Does improving quality save money? . In A Review of Evidence of Which Improvements to Quality Reduce Costs to Health Service Providers , London : The Health Foundation .

Owusu-Frimpong , N. , Nwankwo , S. , & Dason , B. ( 2010 ). Measuring service quality and patient satisfaction with access to public and private healthcare delivery . International Journal of Public Sector Management , 23 ( 3 ), 203 – 220 .

Pandey , N. , Kaushal , V. , Puri , G. D. , Taneja , S. , Biswal , M. , Mahajan , P. , … Agarwal , R. ( 2020 ). Transforming a general hospital to an infectious disease hospital for COVID-19 over 2 weeks . Frontiers in Public Health , 8 , 1 – 8 .

Parasuraman , A. , Zeithaml , V. A. , & Berry , L. L. ( 1985 ). A conceptual model of service quality and its implications for future study . Journal of Marketing , 49 ( 10 ), 41 – 50 .

Parasuraman , A. , Zeithaml , V. A. , & Berry , L. ( 1988 ). Servqual: A multiple-item scale for measuring consumer perceptions of service quality . Journal of Retailing , 64 ( 1 ), 12 – 40 .

Prajoko , Y. W. , & Supit , T. ( 2020 ). Cancer patient satisfaction and perception of chemotherapy services during COVID-19 pandemic in central Java, Indonesia . Asian Pacific Journal of Cancer Care , 5 ( 1 ), 43 – 50 .

Rameshan , P. , & Singh , S. ( 2004 ). Quality of service of primary health centres: Insights from a field study . Vikalpa , 29 ( 3 ), 71 – 82 .

Ramez , W. S. ( 2012 ). Patients' perception of health care quality, satisfaction and behavioral intention: An empirical study in Bahrain . International Journal of Business and Social Science , 3 ( 18 ), 131 – 141 .

Robb , C. E. , de Jager , C. A. , Ahmadi-Abhari , S. , Giannakopoulou , P. , Udeh-Momoh , C. , McKeand , J. , & Middleton , L. ( 2020 ). Associations of social isolation with anxiety and depression during the early COVID-19 pandemic: A survey of older adults in London, UK . Frontiers in Psychiatry , 11 , 1 – 12 .

Saleh , S. , Alameddine , M. , Mourad , Y. , & Natafgi , N. ( 2015 ). Quality of care in primary health care setting in the eastern mediterranean region: A systematic review of the literature . International Journal for Quality in Health Care , 27 ( 2 ), 79 – 88 .

Senic , V. , & Marinkovic , V. ( 2013 ). Patient care, satisfaction and service quality in health care . International Journal of Consumer Studies , 37 ( 3 ), 312 – 319 .

Shabbir , A. , Malik , S. A. , & Malik , S. A. ( 2016 ). Measuring patients' healthcare service quality perceptions, satisfaction, and loyalty in public and private sector hospitals in Pakistan . International Journal of Quality and Reliability Management , 33 ( 5 ), 538 – 557 .

Sharma , J. K. , & Narang , R. ( 2011 ). Quality of healthcare services in rural India: The user perspective . Vikalpa , 36 ( 1 ), 51 – 60 .

Sharma , A. , Prinja , S. , & Aggarwal , A. K. ( 2019 ). Comprehensive measurement of health system performance at district level in India: Generation of a composite index . The International Journal of Health Planning and Management , 34 ( 4 ), e1783 – e1799 .

Simou , E. , Pliatsika , P. , Koutsogeorgou , E. , & Roumeliotou , A. ( 2014 ). Developing a national framework of quality indicators for public hospitals . The International Journal of Health Planning and Management , 29 ( 3 ), e187 – e206 .

Singh , A. , & Prasher , A. ( 2019 ). Measuring healthcare service quality from patients' perspective: Using fuzzy AHP application . Total Quality Management and Business Excellence , 30 ( 3-4 ), 284 – 300 .

Sohail , M. S. ( 2003 ). Service quality in hospitals: More favourable than you might think . Managing Service Quality , 13 ( 3 ), 197 – 206 .

Taner , T. , & Antony , J. ( 2006 ). Comparing public and private hospital care service quality in Turkey . Leadership in Health Services , 19 ( 2 ), 1 – 10 .

Taqi , M. , Bidhuri , S. , Sarkar , S. , Ahmad , W. S. , & Wangchok , P. ( 2017 ). Rural healthcare infrastructural disparities in India: A critical analysis of availability and accessibility . Journal of Multidisciplinary Research in Healthcare , 3 ( 2 ), 125 – 149 .

Tashobya , C. K. , da Silveira , V. C. , Ssengooba , F. , Nabyonga-Orem , J. , Macq , J. , & Criel , B. ( 2014 ). Health systems performance assessment in low-income countries: Learning from international experiences . Globalization and Health , 10 ( 1 ), 1 – 19 .

Taylor , G. ( 2012 ). Readability of OHS documents–A comparison of surface characteristics of OHS text between some languages . Safety Science , 50 ( 7 ), 1627 – 1635 .

Thompson , C. C. , Shen , L. , & Lee , L. S. ( 2020 ). COVID-19 in endoscopy: Time to do more? Gastrointestinal Endoscopy , 92 ( 2 ), 435 – 439 .

Torabipour , A. , Sayaf , R. , Salehi , R. , & Ghasemzadeh , R. ( 2016 ). Analyzing the quality Gapsin the services of rehabilitation centers using the SERVQUAL technique in Ahvaz, Iran . Jundishapur Journal of Health Sciences , 8 ( 1 ), 25 – 30 .

Tucker , J. L. III. , & Adams , S. R. ( 2001 ). Incorporating patient's assessment of satisfaction and quality: An integrative model of patient's evaluations of their care . Managing Service Quality , 11 ( 4 ), 272 – 286 .

Upadhyai , R. , Jain , A. K. , Roy , H. , & Pant , V. ( 2019 ). A review of healthcare service quality dimensions and their measurement . Journal of Health Management , 21 ( 1 ), 102 – 127 .

Wiesniewski , M. , & Wiesniewski , H. ( 2005 ). Measuring service in a hospital colposcopy clinic . International Journal of Health Care Quality Assurance , 18 ( 3 ), 217 – 228 .

Wu , H. Y. , Lin , Y. K. , & Chang , C. H. ( 2011 ). Performance evaluation of extension education centres in universities based on the balanced scorecard . Evaluation and Program Planning , 34 ( 1 ), 37 – 50 .

Wu , H. C. , Li , T. , & Li , M. Y. ( 2016 ). A study of behavioral intentions, patient satisfaction, perceived value, patient trust and experiential quality for medical tourists . Journal of Quality Assurance in Hospitality and Tourism , 17 ( 2 ), 114 – 150 .

Wu , B. , Xiao , H. , Dong , X. , Wang , M. , & Xue , L. ( 2012 ). Tourism knowledge domains: A keyword analysis . Asia Pacific Journal of Tourism Research , 17 ( 4 ), 355 – 380 .

Yee , R. W. , Yeung , A. C. , & Cheng , T. E. ( 2010 ). An empirical study of employee loyalty, service quality and firm performance in the service industry . International Journal of Production Economics , 124 ( 1 ), 109 – 120 .

Yeşilada , F. , & Direktör , E. ( 2010 ). Health care service quality: A comparison of public and private hospitals . African Journal of Business Management , 4 ( 6 ), 962 – 971 .

Zaid , A. A. , Arqawi , S. M. , Mwais , R. M. A. , Al Shobaki , M. J. , & Abu-Naser , S. S. ( 2020 ). The impact of total quality management and perceived service quality on patient satisfaction and behavior intention in Palestinian healthcare organizations . Technology Reports of Kansai University , 62 ( 03 ), 221 – 232 .

Zarei , A. , Arab , M. , Froushani , A. R. , Rashidian , A. , & Ghazi-Tabatabaei , S. M. ( 2012 ). Service quality of private hospitals: The Iranian Patients' perspective . BMC Health Services Research , 12 ( 31 ), 66 – 76 .

Zarei , E. , Daneshkohan , A. , Khabiri , R. , & Arab , M. ( 2015 ). The effect of hospital service quality on patient's trust . Iranian Red Crescent Medical Journal , 17 ( 1 ), 1 – 5 .

Zeithaml , V. A. ( 2000 ). Service quality, profitability, and the economic worth of customers: what we know and what we need to learn . Journal of the Academy of Marketing Science , 28 ( 1 ), 67 – 85 .

Zineldin , M. ( 2006 ). The quality of health care and patient satisfaction: An exploratory investigation of the 5Qs model at some Egyptian and Jordanian medical clinics . International Journal of Health Care Quality Assurance , 19 , 60 – 92 .

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• Open access
• Published: 03 June 2024

The impact of long-term care interventions on healthcare utilisation among older persons: a scoping review of reviews

• Nur Zahirah Balqis-Ali 1 ,
• Suhana Jawahir 1 ,
• Yee Mang Chan 2 ,
• Amanda Wei-Yin Lim 3 ,
• Ummi Wahidah Azlan 1 ,
• Sal Sabila Mohd Shaffie 1 ,
• Weng Hong Fun 1 &
• Shaun Wen Huey Lee 4 , 5  

BMC Geriatrics volume  24 , Article number:  484 ( 2024 ) Cite this article

151 Accesses

Metrics details

As the ageing population grows, the demand for long-term care (LTC) services will rise, concurrently amplifying healthcare utilisation. This review aims to examine and consolidate information on LTC interventions that influence healthcare utilisation among older persons.

A scoping review was performed through a systematic search in PubMed, EBSCO CINAHL, EBM Reviews - Cochrane Database of Systematic Reviews, Embase, APA PsycInfo, EBM Reviews - Health Technology Assessment, and EBM Reviews - NHS Economic Evaluation Database. Systematic reviews with meta-analyses published between 1 January 2010 and 2 June 2022 among older persons aged 60 and above were included. The characteristics of LTC interventions were mapped to the World Health Organization (WHO) Healthy Ageing Framework. The effect sizes of healthcare utilisations for LTC interventions were recalculated using a random-effects model. The methodological quality was assessed with the AMSTAR-2 checklist, while the quality of evidence for each association was evaluated using GRADE.

Thirty-seven meta-analyses were included. The most prominent domain of the healthy ageing framework was managing chronic conditions. One hundred twelve associations between various LTC interventions and healthcare utilisations were identified, with 22 associations impacting healthcare utilisation. Four interventions were supported by suggestive or convincing evidence. Preventive home visits were found to reduce hospital admission (OR: 0.73, 95% CI: 0.59, 0.91, p  = 0.005), caregiver integration during discharge planning (OR: 0.68, 95% CI: 0.57, 0.81, p  < 0.001), and continuity of care (OR: 0.76, 95% CI: 0.61, 0.95, p  = 0.018) reduced hospital readmission, and perioperative geriatric interventions reduced the length of hospital stay (MD: -1.50, 95% CI: -2.24, -0.76, p  < 0.001). None of the associations impacted emergency department visits, medication use, and primary care utilisations with convincing evidence. Most reviews received low methodological quality.

The findings suggest that LTC interventions could benefit from transitioning to a community-based setting involving a multidisciplinary team, including carers. The spectrum of services should incorporate a comprehensive assessment to ensure continuous care.

Peer Review reports

Population ageing is a global phenomenon, with the number of older persons projected to double from 771 million in 2022 to 1.6 billion in 2050 [ 1 ]. Low—and middle-income countries (LMICs) are projected to experience the most significant change, with nearly 80% of the world’s population over 60 living in LMICs by 2050 [ 2 ]. This demographic shift is expected to transform societies across many spectrums, impacting healthcare systems, social welfare programs, economic productivity, and family structures [ 3 ].

As the older population continues to increase, there will be a corresponding rise in the demand for long-term care (LTC) services, encompassing home and community-based care, healthcare monitoring, rehabilitation, and therapy services. These services are defined as those that safeguard older persons’ intrinsic capacities and functional ability, ensuring they align with their fundamental rights, basic freedoms, and human dignity [ 4 , 5 ]. As the healthcare system shifts away from being disease-based and evolves towards holistic and comprehensive care, the importance of LTC services in supporting older persons becomes increasingly acknowledged and emphasised [ 6 ]. In response, the World Health Organization (WHO) identified a need to promote health, prevent disease, maintain intrinsic capacity, and enable the functional ability of older persons by ensuring access to LTC [ 5 ]. The WHO has developed a public health framework for healthy ageing comprising three domains: health services, LTC, and environments [ 7 ]. These domains encompass various aspects of healthcare, such as preventing chronic conditions, facilitating early detection and control, reversing or mitigating declines in capacity, managing advanced chronic conditions, and promoting capacity-enhancing behaviours.

Evidence suggests that diminished functional ability in older persons correlates with increased utilisation of healthcare services, leading to higher treatment costs and a greater likelihood of institutionalisation [ 8 , 9 , 10 ]. Despite some progress in the formal delivery of LTC services in many LMICs, family members or caregivers continue to shoulder the bulk of LTC needs [ 6 ]. Thus, there exists a pressing need to integrate LTC into health systems delivery to ensure that services are readily accessible to support and prevent functional decline among older persons [ 11 ]. The WHO has developed guiding frameworks and models to facilitate the seamless integration of LTC into health system policies, promoting accessibility and efficacy in care delivery [ 12 ]. However, incorporating an effective LTC system is complex, often involving commitments across diverse care settings. In many LMICs, policymakers encounter the challenge of aligning LTC within broader health system perspectives, usually contending with limited resources and conflicting priorities [ 13 , 14 ]. Therefore, it is crucial to identify, map, and summarise the global LTC interventions and services for older persons while considering their influence on healthcare utilisation.

While substantial evidence exists regarding the effectiveness of various LTC interventions [ 15 , 16 , 17 , 18 ], there are conflicting findings. To our knowledge, few studies have mapped the characteristics of LTC interventions [ 19 , 20 ], but the impact of LTC interventions on healthcare utilisation is unknown. Owing to the abundance of knowledge on LTC interventions, we augmented and advanced the existing knowledge through a comprehensive scoping review focused on systematic reviews with meta-analyses. The primary objective is to examine and consolidate information on LTC interventions that influence healthcare utilisation among older persons. These findings are pivotal in guiding policy development, particularly in identifying and prioritising LTC services that positively contribute to the healthcare system and improve the overall care for older persons.

A scoping review was reported based on the methodological framework for scoping studies by Arksey and O’Malley [ 21 ] and Preferred Reporting Items for Systematic Review and Meta-analyses (PRISMA) guidelines [ 22 ]. The research protocol was registered as part of a more extensive study (Trial registration: NMRR-21-467-58076) and in the Open Science Framework (OSF) [ 23 ]. Due to the extent of the study scope and search, the study was amended from an umbrella review to a scoping review. While an umbrella review typically addresses a narrower research question, often focusing on specific interventions or outcomes [ 24 ], the current study encompasses a broader range of both interventions and outcomes. Therefore, it was determined that a scoping review would be a more appropriate methodology based on the research focus.

The scoping review specifically targeted systematic reviews accompanied by meta-analyses, delineated as articles explicitly identified as such in their title, abstract, or methods section. This allows the examination of a range of heterogeneous interventions that could be aggregated to assess and quantify their collective impact on healthcare utilisation. To provide a comprehensive overview of interventions considered in the meta-analysis, individual trials not pooled into meta-analyses in the articles were retained in this study.

Stage 1: identifying the research question

The scoping review aimed to address the following question: What insights does the existing systematic review with meta-analyses offer regarding the impact of LTC interventions on healthcare utilisation among older persons?

Stage 2: identifying relevant studies

A systematic search was performed on the following databases: PubMed, EBSCO CINAHL Plus, Cochrane Database Systematic Review, Embase, APA PsychINFO, EBM Reviews - Health Technology Assessment, and EBM Reviews - NHS Economic Evaluation Database. The search included Medical Subject Headings (MeSH) terms supplemented with a search of reference lists from identified studies (Additional file 1). The initial search occurred in November 2021, with three updated searches in June 2022, May 2023, and April 2024.

Stage 3: study selection

Inclusion criteria.

Studies were eligible for inclusion if they were: a) Systematic reviews with meta-analyses encompassing Randomised Controlled Trials (RCTs) and observational studies investigating both single and multi-component LTC interventions or services; b) included older persons aged 60 years and above; c) targeted interventions or services in any setting, including home, community, healthcare facility, nursing homes or residential aged care facility; d) reported on health service utilisation as an outcome; and e) published between January 2010 and June 2022 in English. This study defined LTC as a wide range of interventions and services, such as managing chronic geriatric conditions, rehabilitation, palliation, promotion, and preventative services [ 25 ]. The search was limited to the year 2010 onwards to allow for the identification of recent evidence. As the aim of this study was to support health systems planning, only healthcare service utilisation reported from a health systems perspective was included, such as a) Hospital utilisation, b) Emergency department (ED) utilisation, c) Medication utilisation, and d) Primary care utilisation [ 26 ].

Exclusion criteria

Studies were excluded if: a) they included a disease-specific population; b) the target participants were not exclusively older persons and included a mixture of younger (below 60 years old) and older persons; c) reported outcomes focused exclusively on caregivers and/or health providers; d) reported on patient outcomes such as health-related quality of life; and e) focused exclusively on outcome measures for economic evaluation.

Screening and selection process

The selected studies were exported to a reference manager (EndNote X9) and deduplicated. Two reviewers independently screened the citation titles and abstracts for inclusion. The full text of the identified articles was retrieved and screened against the inclusion/exclusion criteria by another two independent reviewers. Any disagreements were resolved by consensus with a third reviewer.

Stage 4: charting the data

Two pairs of reviewers then independently extracted the included studies using a standardised, pre-piloted data extraction form. The extracted information included study demographics, information related to primary studies included in the review, and LTC interventions/services. Summary findings were recorded in Excel Microsoft Office 365 (Additional file 2).

Data synthesis and analysis

The results of the study were first described narratively. The LTC interventions were given a code based on the objective of the intervention in preventing or managing older persons’ intrinsic capacities or functional abilities. The coded LTC interventions were then mapped into several domains according to the WHO Healthy Ageing Framework [ 7 ], namely prevention activities, detection and control activities, management of chronic diseases, promotion and support of capacity-enhancing behaviours, ensuring a dignified late life, removing barriers to participation, and compensation for the loss of capacity by three independent reviewers. If needed, two other reviewers discussed any discrepancies and disagreements regarding the adjudication.

Interventions were then grouped into the four primary outcomes: hospital, emergency department, medication, and primary care utilisations and subdivided into separate domains. Hospital utilisation was further split into hospital admission, hospital readmission, length of stay or bed days. Emergency department (ED) utilisation was divided into ED visit, ED revisit, and length of stay. Medication utilisation refers to the number of drug use, and primary care utilisation refers to the number of visits.

Values extracted from all articles were reanalysed to standardise the findings, considering that various articles reported results in different units of measurement. Values were extracted across all interventions mentioned in the articles, irrespective of their inclusion in either meta-analyses or standalone analyses within the article. Trials from separate meta-analyses with similar intervention characteristics were analysed together unless the setting or follow-up duration differed. Redundant trials across different meta-analyses were removed, except in several situations whereby different values were extracted differently from the same trials. This discrepancy could arise from varying definitions of the outcomes among the authors or possibly from some authors reaching out to the primary author for supplementary data. The intervention durations were reclassified into four categories: less than six months, 7–12 months, 13–24 months, and 25–36 months for all outcomes. Consequently, the pooled interventions reported may deviate from the classification utilised in the original article. An illustration of the process flow is depicted in Additional File 3.

Due to the heterogeneity of included articles, RCTs and observational studies were analysed separately. Each association of long-term intervention with healthcare utilisations was reported in mean difference (MD) or odds ratio (OR) with a corresponding 95% confidence interval (CI) using the random-effects model, given the heterogeneity in design between and within studies [ 27 ]. The analysis was repeated using a fixed-effect model as a sensitivity analysis to investigate whether the method contributed to the observed high heterogeneity. When data from the articles were insufficient for reanalysis, we tried to contact the authors to gain the data. However, in cases where authors were not contactable, the data was extracted from the result as reported or marked as not reported (NR) when the data was unavailable. All statistical analyses were conducted with Stata version 14.0 (Stata Corp, College Station, TX, USA).

Assessment of methodological quality

Two independent reviewers assessed the methodological quality of the included studies using the A Measurement Tool to Assess Systematic Reviews-2 (AMSTAR-2) checklist [ 28 ]. The index rates the quality of the studies based on seven critical and nine non-critical domains. Studies were rated high, moderate, low, and critically low quality. To aid in interpreting results, we assessed the quality of evidence of each outcome using the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) [ 29 ]. The quality of evidence was evaluated based on five domains, including a) risk of bias in individual studies b), inconsistency c), indirectness d), imprecision, and e) publication bias, subsequently classified as high, moderate, low, or very low quality. The quality ratings assigned to the evidence indicate the level of assurance in the accuracy of the estimated effects [ 30 ].

Stage 5: collating, summarising, and reporting the results

All results were collated and summarised. The LTC interventions and their impacts on healthcare utilisation were presented.

Ethics considerations

This scoping review was part of a more extensive study, ‘Simulation of Long-Term Care for Elderly in Malaysia’ (MyLTC, Trial registration number: NMRR-21-467-58076). The MyLTC protocol was approved by the Medical Research and Ethics Committee (MREC), Ministry of Health Malaysia. The study was conducted by Good Clinical Practice guidelines and the Declaration of Helsinki.

The initial search identified 3,350 records, with 3,056 records screened after deduplication. Fifty-one full-text articles were screened, and 26 articles were selected after exclusion. An additional 11 studies were sourced from the reference list search. A total of 37 articles were included in this review (Fig.  1 ). The reasons for exclusion are provided in Additional File 4.

PRISMA 2020 flow diagram

Characteristics and methodological quality of articles exploring associations of long-term care interventions with healthcare utilisations for older persons

Of the 37 articles included, 17 were RCTs or cluster RCTs, while the remaining were mixed study designs. The median and interquartile range (IQR) for the number of studies per article was 17 [ 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ]. The sample sizes ranged from 811 to the largest, involving 108,838 participants, with a median (IQR) of 9,679 (3,976 − 18,992). The duration of follow-up varies between studies, with the shortest follow-up within one week and the longest over 60 months. A total of 82 outcomes across all articles were identified. The most studied outcomes reported were hospital readmission ( n  = 19, 23.2%) and hospital admission ( n  = 18, 21.9%).

Most articles were rated either low or critically low in the methodological assessment using AMSTAR-2 (Table  1 and Additional file 5). This was mainly due to methodological issues, including the need for more justification for excluding individual studies and a lack of assessment regarding publication bias and its potential impact. The descriptive characteristics of the 37 eligible articles are provided in Table  1 .

Characteristics and mapping of long-term care interventions to the healthy ageing Framework

Altogether, 37 LTC interventions were included in the analysis (Table  2 ). Although various interventions share similar names, they were implemented in distinct settings, yielded diverse outcomes, featured varying durations of outcomes follow-up, or engaged different providers, warranting separate descriptions. No overlap of intervention from the same meta-analyses was identified.

Most interventions involved multidisciplinary teams or coordination, with only six interventions among a single healthcare professional [ 37 , 42 , 45 , 50 , 52 , 67 ]. The most common settings were community-based or involved transfer back to the community following discharge from the hospital, including the older person’s home, with 17 interventions. Nine interventions were set in long-term care institutions [ 31 , 44 , 45 , 51 , 52 , 55 , 58 , 64 , 65 ], with the remaining in hospitals or in mixed settings. The most common type of intervention was the Comprehensive Geriatric Assessment (CGA) ( n  = 8, 23.5%). However, the intervention was applied across various settings, delivered by different teams of healthcare professionals, and had different follow-up durations. Mapping to the WHO Healthy Ageing Framework revealed that 11 interventions focused on managing chronic conditions [ 31 , 42 , 44 , 45 , 49 , 52 , 53 , 55 , 58 , 64 , 67 ], ten supported capacity enhancement [ 37 , 41 , 46 , 51 , 56 , 59 , 62 , 63 , 65 , 66 ], eight were on early detection and control [ 33 , 35 , 36 , 38 , 39 , 40 , 43 , 60 ], six were to promote capacity enhancement [ 32 , 47 , 48 , 50 , 57 , 61 ], and one each for prevention of chronic conditions [ 54 ] and compensation of capacity [ 34 ].

Associations between long-term care interventions with healthcare utilisations among older persons

One hundred and twelve associations were reported between LTC interventions and healthcare utilisations, mostly on hospital utilisation ( n  = 86, 76.8%). Seventeen associations were reported on ED utilisation, six on medication utilisation and three on primary care service utilisation (Additional file 6). Twenty-two out of the 112 associations (19.6%) were statistically significant (Table  3 ). The GRADE reporting for all associations is reported in Additional File 7.

Hospital utilisation

Altogether, 35 associations discussed hospital admission (Additional file 6). Six associations (17.1%) reflected a significant reduction in the risk of hospital admission among older persons. The associations mapped to five interventions: Deprescribing interventions [ 64 ], community-based aged care [ 47 ], preventive home visits [ 48 ], CGA implemented in a community setting [ 33 ], and medication review by pharmacists in Long-term Care Facility (LTCF) [ 52 ]. Three of the five significant interventions were implemented in the community-based setting (community-based aged care [ 47 ], preventive home visits [ 48 ], and CGA implemented in a community setting [ 33 ]). Among these five interventions, only preventive home visits at 7–12 months follow-up (OR: 0.73, 95% CI: 0.59, 0.91, p  = 0.005) received a moderate GRADE quality of evidence rating [ 48 ], with all other interventions rated either low or very low quality.

For hospital readmission, there were 32 associations (Additional file 6). Eight associations (25%) from six interventions were significantly associated with hospital readmission. All six interventions involved implementation in a community setting or a transfer back into the community following discharge from the hospital [ 41 , 47 , 51 , 56 , 63 , 65 ]. Six associations were found to reduce hospital readmission, with only one intervention, caregiver integration during discharge planning at 1–6 months follow-up (OR: 0.68, 95% CI: 0.57, 0.81, p  < 0.001), had high-quality evidence [ 51 ]. This intervention included 13 studies with a low heterogeneity. Another intervention found to have a moderate quality of evidence in reducing hospital readmission was continuity of care at a 7–12 months follow-up (OR: 0.76, 95% CI: 0.61, 0.95, p  = 0.018) [ 41 ]. The other two interventions representing four associations with low and very low-quality evidence were integrating primary healthcare in aftercare [ 63 ] and transitional care programs for community-dwelling older persons [ 56 ]. The remaining two interventions increased the odds or risk of hospital readmissions among older persons (transitional care programs for long-term care facility residents [ 65 ] and community-based aged-care interventions [ 47 ]). However, both interventions received low and very low-quality evidence.

There were 17 associations regarding the outcome of length of stay (Additional file 6). Three associations (17.6%) from three interventions demonstrated significant reductions in the length of hospital stay [ 43 , 54 , 59 ]. All interventions were implemented in a hospital setting. Perioperative geriatric interventions at a 12-month follow-up, which involved twelve studies, were the only intervention with a moderate quality of evidence (MD: -1.50, 95% CI: -2.24, -0.76, p  < 0.001) and low heterogeneity (32.7%) [ 54 ]. The remaining two interventions, early support discharge [ 59 ] and CGA, were implemented in the ward and had low or very low-quality evidence and high or moderate heterogeneity.

Utilisation of emergency department

ED utilisation was found to have 17 associations (Additional file 6). Three associations (17.6%) from three interventions significantly reduced ED utilisation. Two were on ED visits (community-based case management [ 49 ] and CGA implemented in a community setting [ 33 ]), and one was on the length of ED stay (transitional care programs for long-term care facility residents [ 65 ]). However, all three interventions were found to have either low or very low-quality evidence.

Utilisation of medications and prescriptions

The outcome of drug use had six associations (Additional file 6). Only one association (16.7%) from an intervention, anti-microbial stewardship at a 12-month follow-up, significantly reduced the number of drugs used among older persons (MD: -0.47, 95% CI: -0.87, -0.07, p  = 0.02) [ 58 ]. However, this association was graded as having very low quality and high heterogeneity.

Utilisation of primary care

Three associations were found for the outcome of primary care visits (Additional file 6). One association (33.3%) from an intervention was statistically significant. A community-based aged care intervention increased the number of visits (RR: 1.43, 95% CI: 1.11, 1.18, p: 0.002) [ 47 ]. The quality of evidence was found to be very low.

Sensitivity analysis

The re-analysis of associations with high heterogeneity using a fixed-effect model did not significantly alter the associations between the intervention and the outcome measured.

Thirty-seven meta-analyses were included in the study, comprising 112 associations between various LTC interventions and healthcare utilisations. Four of the 22 statistically significant associations were supported by suggestive or convincing evidence and remarked as either high or moderate quality of evidence. These associations include four different LTC interventions: preventive home visits were found to reduce hospital admission [ 48 ], caregiver integration during discharge planning [ 51 ], and continuity of care [ 41 ], reduced hospital readmission, and perioperative geriatric interventions [ 54 ] reduced the length of hospital stay. There was no convincing evidence on the association between LTC and ED, medication and primary care utilisation.

Mapping the LTC interventions to the WHO Healthy Ageing Framework revealed that the most extensive domain explored was managing chronic conditions (11 out of 37 interventions), followed by support of capacity enhancement (9 out of 37 interventions). These findings fit well with the aims of the healthy ageing framework, whereby both domains were crucial in preventing substantial loss of capacity among older persons [ 7 ]. However, it represents opportunities or a need to explore services in other domains, facilitating the evidence-based implementation of more comprehensive LTC services. This is essential for supporting health systems in meeting the evolving needs of the ageing population, ensuring that older persons receive high-quality and coordinated care for their well-being. Most interventions were found to be implemented in a community setting or involved a transfer back into the community following discharge from the hospital. This finding aligns with other evidence emphasising that while LTC services can be implemented in various settings, a community-based approach offers the most benefit to older persons [ 7 , 19 , 68 ]. However, this finding could also be due to the exclusion of interventions among disease-specific conditions, which may have been more extensively implemented in hospital or institutional-based settings. Therefore, future comparisons and discussions should consider the contextual factors of LTC implementations, including the specific settings in which they occur.

Most interventions involved multidisciplinary teams of various health, social care, and community-based providers, supporting findings and recommendations elsewhere [ 7 , 20 ]. Indeed, the involvement of relevant providers in caring for and providing LTC services for older persons is essential in ensuring that all their needs are adequately assessed and addressed in an integrated and coordinated approach [ 12 , 68 ]. CGA emerged as the most common intervention recurring across all meta-analyses. It signifies the importance of a thorough clinical and psychological evaluation and the presence of support evaluation in delivering care to older persons [ 69 ]. However, since this review identified interventions labelled as ‘long-term care’, it could also suggest that CGA was among the most developed LTC interventions that have been assessed and evaluated across multitudes of different outcomes, including healthcare utilisations, which highlights future research opportunities for evaluating other LTC interventions that were less explored.

This review found suggestive evidence that preventive home visits [ 48 ] reduced the likelihood of hospital admission among older persons. The service was provided by a multidisciplinary team offering comprehensive care, including assessment of health and support needs, referral to relevant care providers, medication review, and rehabilitation at the older person’s home [ 48 ]. The approach ensures early detection of diseases and conditions, improves access to care, and offers a large spectrum of services that are otherwise not provided during routine care [ 70 ]. The finding reciprocates a recent umbrella review reporting that home visits were favourable in reducing hospital admission frequency [ 71 ]. As debated in the review, the definitions and components of what constituted ‘home visits’ vary across studies and warrant further evaluation. Nevertheless, the heterogeneity for this intervention was found to be low in this study [ 72 ].

Caregiver integration during discharge planning had convincing evidence in reducing hospital readmission [ 51 ]. The service included linking caregivers to external or community resources, preparing written care plans, performing caregiver assessment, medication reconciliation, and iterative teaching sessions in providing care, all planned and executed during the discharge process of older persons from the hospital. Discharge planning implies a comprehensive plan was prepared based on the anticipated healthcare needs of the older persons [ 73 ]. Including caregivers in the discharge planning enhanced the care by delegating part of the responsibilities to the person managing the patient [ 74 ]. Similarly, continuity of care upon discharge from the hospital was found to have suggestive evidence in reducing hospital readmission [ 41 ]. Early hospital readmissions are often due to insufficient recognition of a patient’s needs, leading to unaddressed issues and poor management at home [ 75 ]. Ensuring that care is continued primarily through care coordination between hospital and primary healthcare providers means the underlying disease that caused the earlier hospital admission is appropriately managed. A recurrent episode requiring further hospitalisation (readmission) is thus prevented [ 41 ]. The overarching idea was that to reduce hospital readmission, there was a need for a comprehensive assessment and identification of an older person’s health and other requirements within the hospital setting before discharge. This process involves crafting a detailed, coordinated care plan that includes caregivers and other healthcare providers, ensuring a smooth transition and effective ongoing care management post-discharge.

Perioperative geriatric interventions, defined as any program aiming to enhance clinical outcomes of older persons having surgeries performed, was the only intervention with suggestive evidence of reducing the length of stay in hospital [ 54 ]. The interventions mitigate the increased risk associated with surgeries by customising care to the specific needs of the patients, potentially preventing functional decline and related complications [ 54 ]. No convincing LTC intervention was found to influence ED, drug use, and primary care utilisation. This could be due to the limited number of studies that evaluated these outcomes, warranting future research.

Implications for practice and future research

This scoping review offers an extensive summary across meta-analyses on existing LTC interventions that impacted healthcare utilisations. Since the scope of this study covers the general older population, the findings may be beneficial for policymakers looking to implement LTC interventions at a macro rather than disease-specific level. The review found a few effective LTC interventions in reducing healthcare utilisations. Nevertheless, from the health systems point of view, it provides insights for potential interventions that could alleviate the strain on healthcare systems, exacerbated by the increasing prevalence of non-communicable diseases (NCDs) and age-related functional disabilities [ 76 ]. It also means future research may be directed towards exploring the impact of more and newer LTC interventions towards healthcare utilisations. The limited number of existing studies assessing the impact of LTC interventions on healthcare utilisation may partly explain the little evidence found through this study. Still, it also suggests that LTC interventions could have broader positive effects on various other outcomes, including individual well-being, mortality, clinical outcomes, and functional limitations, which were not within the scope of the current study. Despite the small number of effective LTC interventions found, the overall picture suggests that LTC interventions need to move away from hospital or institution-based implementations to the community or older persons’ homes. Such a move offers integrated, person-centred care at the place most comfortable for the older person, increasing adherence to care [ 77 ]. Comprehensive assessment identifying all aspects of the needs of older persons while being hospitalised, coupled with a properly documented detailed discharge plan, which includes roles of carers and other professionals that will continue the care upon discharge, is crucial in ensuring older persons’ well-being, hence impacting the subsequent healthcare utilisation.

Limitations

This scoping review has several limitations. The search strategy relied on interventions labelled ‘long-term care’ or other terms referring to LTC interventions. While the keywords postulated in the study covered as comprehensive LTC interventions as possible, more interventions may have served LTC functions but were not labelled as such. While the study covers multiple outcomes related to healthcare utilisations, more outcomes existed that were not included in the current review. For example, preventable hospitalisation, preventable ED visits, and time to hospitalisation were among various related outcomes not included in the present review. While the inclusion of meta-analysis in our review offers a comprehensive overview of the outcomes’ direction and strength across different interventions, it is essential to acknowledge the diversity in implementation, contextual backgrounds, and settings of various other interventions, making it impossible for studies to pool and analyse all existing interventions. As a result, while our current review encompasses broad LTC interventions for older persons analysed within a systematic review with meta-analysis, it is essential to recognise that a wealth of additional evidence available could offer further insights into practical strategies for reducing healthcare utilisation among this population. The review also did not directly assess the quality of individual primary studies included in each meta-analysis but instead relied on the assessment reported by the authors. A further limitation was that we did not perform subgroup analysis (for example, by age groups, sex, and location where the intervention was delivered) due to the lack of data for grading the quality evidence for most interventions.

The findings of this study suggest LTC interventions could benefit from transitioning to a community-based setting, involving a multidisciplinary team including the carers that offer a large spectrum of services fulfilling various needs of older persons, incorporate comprehensive and holistic assessment plan, and include a detailed discharge plan that ensures integrated, coordinated and continuous care is achieved. However, the current evidence pertains to hospital utilisation, with more research needed to identify interventions impacting other healthcare utilisations. Nevertheless, the present findings offer insights into effective LTC interventions that may be considered for implementation by policymakers at a macro level.

Availability of data and materials

The data analysed for this review is part of the ‘Simulation of Long-Term Care for Elderly in Malaysia’ (MyLTC) study and belongs to the Ministry of Health Malaysia. Requests for the data can be obtained from the Principal Investigator, Dr Fun Weng Hong, through email: [email protected] with permission from the Director-General of Health, Malaysia.

Abbreviations

A Measurement Tool to Assess Systematic Reviews-2

Comprehensive Geriatric Assessment

Confidence interval

Emergency department

Grading of Recommendations, Assessment, Development, and Evaluations

Interquartile range

Low- and middle-income countries

• Long-term care

Long-term Care Facility

Mean difference

Medical Subject Headings

Medical Research and Ethics Committee

Non-communicable diseases

Not reported

Open Science Framework

Preferred Reporting Items for Systematic Review and Meta-analyses

Randomised Controlled Trials

World Health Organization

United Nations Department of Economic and Social Affairs, Population Division. World Population Prospects 2022: Summary of Results. New York; 2022.

World Health Organization. Ageing and health 2022 [ https://www.who.int/news-room/fact-sheets/detail/ageing-and-health .

European Commission. European Commission Report on the Impact of Demographic Change. 2020.

Kane RA, Kane RL, Ladd RC. The heart of long term care. USA: Oxford University Press; 1998.

Book   Google Scholar  

World Health Organization. Decade of healthy ageing: baseline report. 2021.

Google Scholar  

World Health Organization. Long-term care financing: lessons for low-and middle-income settings: brief 1: drivers of the demand for long-term care. 2024.

Beard JR, Officer A, De Carvalho IA, Sadana R, Pot AM, Michel J-P, et al. The World report on ageing and health: a policy framework for healthy ageing. Lancet. 2016;387(10033):2145–54.

Article   PubMed   Google Scholar  

Fried TR, Bradley EH, Williams CS, Tinetti ME. Functional disability and health care expenditures for older persons. Arch Intern Med. 2001;161(21):2602–7.

Article   CAS   PubMed   Google Scholar  

Miller EA, Weissert WG. Predicting elderly people’s risk for nursing home placement, hospitalization, functional impairment, and mortality: a synthesis. Med care Res Rev. 2000;57(3):259–97.

Palladino R, Tayu Lee J, Ashworth M, Triassi M, Millett C. Associations between multimorbidity, healthcare utilisation and health status: evidence from 16 European countries. Age Ageing. 2016;45(3):431–5.

Article   PubMed   PubMed Central   Google Scholar  

Tessier L, de Wulf N, Momose Y. Long-term care in the context of population ageing: A rights-based approach to universal coverage: ILO Working Paper. Geneva: International Labour Office; 2022.

Brodsky J, Habib J, Hirschfeld M. Key policy issues in long-term care. Geneva: World Health Organization; 2003.

Feng Z. Global convergence: aging and long-term care policy challenges in the developing world. J Aging Soc Policy. 2019;31(4):291–7.

World Health Organization. Long-term care financing: lessons for low-and middle-income settings: brief 2: decisions about population coverage of long-term care. 2024.

Abbott RA, Whear R, Thompson-Coon J, Ukoumunne OC, Rogers M, Bethel A, et al. Effectiveness of mealtime interventions on nutritional outcomes for the elderly living in residential care: a systematic review and meta-analysis. Ageing Res Rev. 2013;12(4):967–81.

Cao Py Z, Qh X, Mz K, Ln XL. The effectiveness of exercise for fall prevention in nursing home residents: a systematic review meta-analysis. J Adv Nurs. 2018;74(11):2511–22.

Frost R, Belk C, Jovicic A, Ricciardi F, Kharicha K, Gardner B, et al. Health promotion interventions for community-dwelling older people with mild or pre-frailty: a systematic review and meta-analysis. BMC Geriatr. 2017;17:1–13.

Article   Google Scholar  

Giné-Garriga M, Roqué-Fíguls M, Coll-Planas L, Sitjà-Rabert M, Salvà A. Physical exercise interventions for improving performance-based measures of physical function in community-dwelling, frail older adults: a systematic review and meta-analysis. Arch Phys Med Rehabil. 2014;95(4):753–69. e3.

Arias-Casais N, Thiyagarajan JA, Perracini MR, Park E, Van den Block L, Sumi Y, et al. What long-term care interventions have been published between 2010 and 2020? Results of a WHO scoping review identifying long-term care interventions for older people around the world. BMJ Open. 2022;12(1):e054492.

Bayly J, Bone AE, Ellis-Smith C, Yaqub S, Yi D, Nkhoma KB, et al. Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review. BMJ Open. 2021;11(12):e048417.

Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19–32.

Moher D, Shamseer L, Clarke M, Ghersi D, Liberati A, Petticrew M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Reviews. 2015;4(1):1–9.

Balqis-Ali NZ, Jawahir S, Mohd Shaffie SS, Azlan UW, Fun WH, Chan YM, Lim AWY, Lee SWH. The impact of long-term care interventions on healthcare utilisation among older persons: A scoping review of meta-analyses [Internet]. OSF; 2024. [Available from: https://www.osf.io/sjfzn ].

Aromataris E, Fernandez RS, Godfrey C, Holly C, Khalil H, Tungpunkom P. Methodology for JBI umbrella reviews. Joanna Briggs Institute Reviewers’ Manual. Australia: The Joanna Briggs Institute; 2014.

World Health Organization. Rebuilding for sustainability and resilience: strengthening the integrated delivery of long-term care in the European Region. Copenhagen: World Health Organization, Regional Office for Europe; 2022.

Arueira Chaves L, de Serio S, dos Santos D, Rodrigues Campos M, Luiza VL. Use of health outcome and health service utilization indicators as an outcome of access to medicines in Brazil: perspectives from a literature review. Public Health Rev. 2019;40(1):1–20.

Dettori JR, Norvell DC, Chapman JR. Fixed-effect vs random-effects models for meta-analysis: 3 points to consider. Global Spine J. 2022;12(7):1624–6.

Shea BJ, Reeves BC, Wells G, Thuku M, Hamel C, Moran J, et al. AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. BMJ. 2017;358:j4008–4008.

Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924–6.

Balshem H, Helfand M, Schünemann HJ, Oxman AD, Kunz R, Brozek J, et al. GRADE guidelines: 3. Rating the quality of evidence. J Clin Epidemiol. 2011;64(4):401–6.

Almutairi H, Stafford A, Etherton-Beer C, Flicker L. Optimisation of medications used in residential aged care facilities: a systematic review and meta-analysis of randomised controlled trials. BMC Geriatr. 2020;20(1):1–19.

Beswick AD, Gooberman-Hill R, Smith A, Wylde V, Ebrahim S. Maintaining independence in older people. Reviews Clin Gerontol. 2010;20(2):128–53.

Briggs R, McDonough A, Ellis G, Bennett K, O'Neill D, Robinson D. Comprehensive Geriatric Assessment for community‐dwelling, high‐risk, frail, older people. Cochrane Database Syst Reviews. 2022;5(5):CD012705.

Cochrane A, Furlong M, McGilloway S, Molloy DW, Stevenson M, Donnelly M. Time‐limited home‐care reablement services for maintaining and improving the functional independence of older adults. Cochrane Database Syst Rev. 2016;10(10):CD010825.

Conroy SP, Stevens T, Parker SG, Gladman JR. A systematic review of comprehensive geriatric assessment to improve outcomes for frail older people being rapidly discharged from acute hospital:‘interface geriatrics’. Age Ageing. 2011;40(4):436–43.

Deschodt M, Flamaing J, Haentjens P, Boonen S, Milisen K. Impact of geriatric consultation teams on clinical outcome in acute hospitals: a systematic review and meta-analysis. BMC Med. 2013;11:1–13.

Deschodt M, Laurent G, Cornelissen L, Yip O, Zuniga F, Denhaerynck K, et al. Core components and impact of nurse-led integrated care models for home-dwelling older people: a systematic review and meta-analysis. Int J Nurs Stud. 2020;105:103552.

Ekdahl A, Sjöstrand F, Ehrenberg A, Oredsson S, Stavenow L, Wisten A, et al. Frailty and comprehensive geriatric assessment organized as CGA-ward or CGA-consult for older adult patients in the acute care setting: a systematic review and meta-analysis. Eur Geriatr Med. 2015;6(6):523–40.

Ellis G, Gardner M, Tsiachristas A, Langhorne P, Burke O, Harwood RH, et al. Comprehensive geriatric assessment for older adults admitted to hospital. Cochrane Database Syst Rev. 2017;9(9):CD006211.

Ellis G, Whitehead MA, Robinson D, O’Neill D, Langhorne P. Comprehensive geriatric assessment for older adults admitted to hospital: meta-analysis of randomised controlled trials. BMJ. 2011;343:d6553.

Facchinetti G, D’Angelo D, Piredda M, Petitti T, Matarese M, Oliveti A, et al. Continuity of care interventions for preventing hospital readmission of older people with chronic diseases: a meta-analysis. Int J Nurs Stud. 2020;101:103396.

Forster A, Young J, Lambley R, Langhorne P. Medical day hospital care for the elderly versus alternative forms of care. Cochrane Database Syst Rev. 2008;(4):CD001730.

Fox MT, Persaud M, Maimets I, O’Brien K, Brooks D, Tregunno D, et al. Effectiveness of acute geriatric unit care using acute care for elders components: a systematic review and meta-analysis. J Am Geriatr Soc. 2012;60(12):2237–45.

Hill-Taylor B, Walsh K, Stewart S, Hayden J, Byrne S, Sketris IS. Effectiveness of the STOPP/START (Screening Tool of older persons’ potentially inappropriate Prescriptions/Screening tool to alert doctors to the right treatment) criteria: systematic review and meta‐analysis of randomized controlled studies. J Clin Pharm Ther. 2016;41(2):158–69.

Lee JK, Slack MK, Martin J, Ehrman C, Chisholm-Burns M. Geriatric patient care by US pharmacists in healthcare teams: systematic review and meta‐analyses. J Am Geriatr Soc. 2013;61(7):1119–27.

Lowthian JA, McGinnes RA, Brand CA, Barker AL, Cameron PA. Discharging older patients from the emergency department effectively: a systematic review and meta-analysis. Age Ageing. 2015;44(5):761–70.

Luker JA, Worley A, Stanley M, Uy J, Watt AM, Hillier SL. The evidence for services to avoid or delay residential aged care admission: a systematic review. BMC Geriatr. 2019;19:1–20.

Mayo-Wilson E, Grant S, Burton J, Parsons A, Underhill K, Montgomery P. Preventive home visits for mortality, morbidity, and institutionalization in older adults: a systematic review and meta-analysis. PLoS ONE. 2014;9(3):e89257.

Poupard N, Tang CY, Shields N. Community-based case management does not reduce hospital admissions for older people: a systematic review and meta-analysis. Aust Health Rev. 2019;44(1):83–92.

Spiers G, Matthews F, Moffatt S, Barker R, Jarvis H, Stow D, et al. Impact of social care supply on healthcare utilisation by older adults: a systematic review and meta-analysis. Age Ageing. 2019;48(1):57–66.

Rodakowski J, Rocco PB, Ortiz M, Folb B, Schulz R, Morton SC, et al. Caregiver integration during discharge planning for older adults to reduce resource use: a metaanalysis. J Am Geriatr Soc. 2017;65(8):1748–55.

Sadowski CA, Charrois TL, Sehn E, Chatterley T, Kim S. The role and impact of the pharmacist in long-term care settings: a systematic review. J Am Pharmacists Association. 2020;60(3):516–24 e2.

Tecklenborg S, Byrne C, Cahir C, Brown L, Bennett K. Interventions to reduce adverse drug event-related outcomes in older adults: a systematic review and meta-analysis. Drugs Aging. 2020;37:91–8.

Thillainadesan J, Yumol MF, Hilmer S, Aitken SJ, Naganathan V. Interventions to improve clinical outcomes in older adults admitted to a surgical service: a systematic review and meta-analysis. J Am Med Dir Assoc. 2020;21(12):1833–43. e20.

Wallerstedt SM, Kindblom JM, Nylén K, Samuelsson O, Strandell A. Medication reviews for nursing home residents to reduce mortality and hospitalization: systematic review and meta-analysis. Br J Clin Pharmacol. 2014;78(3):488–97.

Weeks LE, Macdonald M, Martin-Misener R, Helwig M, Bishop A, Iduye DF, et al. The impact of transitional care programs on health services utilization in community-dwelling older adults: a systematic review. JBI Evid Synthesis. 2018;16(2):345–84.

Wong KC, Wong FKY, Yeung WF, Chang K. The effect of complex interventions on supporting self-care among community-dwelling older adults: a systematic review and meta-analysis. Age Ageing. 2018;47(2):185–93.

Crespo-Rivas JC, Guisado-Gil AB, Peñalva G, Rodríguez-Villodres Á, Martín-Gandul C, Pachón-Ibáñez ME, et al. Are antimicrobial stewardship interventions effective and safe in long-term care facilities? A systematic review and meta-analysis. Clin Microbiol Infect. 2021;27(10):1431–8.

Williams S, Morrissey A-M, Steed F, Leahy A, Shanahan E, Peters C, et al. Early supported discharge for older adults admitted to hospital with medical complaints: a systematic review and meta-analysis. BMC Geriatr. 2022;22(1):302.

O’Shaughnessy Í, Robinson K, O’Connor M, Conneely M, Ryan D, Steed F, et al. Effectiveness of acute geriatric unit care on functional decline, clinical and process outcomes among hospitalised older adults with acute medical complaints: a systematic review and meta-analysis. Age Ageing. 2022;51(4):afac081.

Lin I, Glinsky J, Dean C, Graham P, Scrivener K. Effectiveness of home-based exercise for improving physical activity, quality of life and function in older adults after hospitalisation: a systematic review and meta-analysis. Clin Rehabil. 2022;36(9):1170–85.

Van Grootven B, Flamaing J, Dierckx de Casterlé B, Dubois C, Fagard K, Herregods MC, et al. Effectiveness of in-hospital geriatric co-management: a systematic review and meta-analysis. Age Ageing. 2017;46(6):903–10.

Li R, Geng J, Liu J, Wang G, Hesketh T. Effectiveness of integrating primary healthcare in aftercare for older patients after discharge from tertiary hospitals—a systematic review and meta-analysis. Age Ageing. 2022;51(6):afac151.

Kua C-H, Mak VS, Lee SWH. Health outcomes of deprescribing interventions among older residents in nursing homes: a systematic review and meta-analysis. J Am Med Dir Assoc. 2019;20(3):362–72. e11.

Birtwell K, Planner C, Hodkinson A, Hall A, Giles S, Campbell S, et al. Transitional care interventions for older residents of long-term care facilities: a systematic review and meta-analysis. JAMA Netw Open. 2022;5(5):e2210192–e.

Tomlinson J, Cheong V-L, Fylan B, Silcock J, Smith H, Karban K, et al. Successful care transitions for older people: a systematic review and meta-analysis of the effects of interventions that support medication continuity. Age Ageing. 2020;49(4):558–69.

Lee SWH, Mak VSL, Tang YW. Pharmacist services in nursing homes: a systematic review and meta-analysis. Br J Clin Pharmacol. 2019;85(12):2668–88.

Tamiya N, Noguchi H, Nishi A, Reich MR, Ikegami N, Hashimoto H, et al. Population ageing and wellbeing: lessons from Japan’s long-term care insurance policy. Lancet. 2011;378(9797):1183–92.

Parker SG, McCue P, Phelps K, McCleod A, Arora S, Nockels K, et al. What is comprehensive geriatric assessment (CGA)? An umbrella review. Age Ageing. 2018;47(1):149–55.

Rosenberg T. Acute hospital use, nursing home placement, and mortality in a frail community-dwelling cohort managed with Primary Integrated Interdisciplinary Elder Care at Home. J Am Geriatr Soc. 2012;60(7):1340–6.

Eltaybani S, Kawase K, Kato R, Inagaki A, Li C-C, Shinohara M, et al. Effectiveness of home visit nursing on improving mortality, hospitalization, institutionalization, satisfaction, and quality of life among older people: umbrella review. Geriatr Nurs. 2023;51:330–45.

Higgins JP, Thompson SG. Quantifying heterogeneity in a meta-analysis. Stat Med. 2002;21(11):1539–58.

Craven E, Conroy S. Hospital readmissions in frail older people. Reviews Clin Gerontol. 2015;25(2):107–16.

Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change: report from a National Consensus Development Conference. San Francisco; 2006.

Zuckerman RB, Sheingold SH, Orav EJ, Ruhter J, Epstein AM. Readmissions, observation, and the hospital readmissions reduction program. N Engl J Med. 2016;374(16):1543–51.

Holmes W. Projecting the need for and cost of long-term care for older persons. 2021.

Sanerma P, Miettinen S, Paavilainen E, Åstedt-Kurki P. A client-centered approach in home care for older persons–an integrative review. Scand J Prim Health Care. 2020;38(4):369–80.

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Acknowledgements

We thank the Director-General of Health, Ministry of Health Malaysia, for permission to publish this review.

This review was part of a more extensive study, ‘Simulation of Long-Term Care for Elderly in Malaysia (MyLTC)’ (Trial registration: NMRR-21-467-58076). The MyLTC study is funded by the Ministry of Health Malaysia (NIH/800-3/2/1 Jilid 8 (35), Warrant number: 91000050). Part of the funding was used to support the conduct of this review.

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Contributions

NZB, YMC, SJ, and AL contributed to the early conception and study design. NZB, YMC, SJ, AL, WHF, and SWHL conceived and designed the review. NZB, YMC, SJ, AL, UWA, and SMS performed the review. SWHL provided technical advice on data extraction and analysis. NZB, YMC, SJ, AL, UWA, SMS and WHF analysed and interpreted the data. NZB, YMC, SJ, AL, UWA, SMS, WHF, and SWHL contributed to the writing and reviewing of the manuscript.

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Supplementary Information

Additional file 1. search strategy , additional file 2. template for extraction record, additional file 3. flowchart for reanalysing extracted values, additional file 4. excluded articles, additional file 5. amstar-2 assessment of all included studies, 12877_2024_5097_moesm6_esm.docx.

Additional file 6. Summary of associations between long-term care interventions with hospital utilisation among older persons

Additional file 7. GRADE assessment for significant associations

Additional file 8. prior checklist, 12877_2024_5097_moesm9_esm.docx.

Additional file 9. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist

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Balqis-Ali, N.Z., Jawahir, S., Chan, Y.M. et al. The impact of long-term care interventions on healthcare utilisation among older persons: a scoping review of reviews. BMC Geriatr 24 , 484 (2024). https://doi.org/10.1186/s12877-024-05097-9

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DOI : https://doi.org/10.1186/s12877-024-05097-9

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AHRQ’s Healthcare Extension Service—State-Based Solutions to Health Care Improvement

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What would you do if you had $1 billion over 10 years and wanted to make a significant impact on health care delivery? At the Agency for Healthcare Research and Quality (AHRQ), this is the question we set out to answer when deciding how best to invest funds from the Patient-Centered Outcomes Research Trust Fund, established under the Affordable Care Act (ACA) in 2010.

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Barriers and facilitators to mental health treatment access and engagement for LGBTQA+ people with psychosis: a scoping review protocol

• Cláudia C. Gonçalves   ORCID: orcid.org/0000-0001-6767-0920 1 ,
• Zoe Waters 2 ,
• Shae E. Quirk 1 ,
• Peter M. Haddad 1 , 3 ,
• Ashleigh Lin 4 ,
• Lana J. Williams 1 &
• Alison R. Yung 1 , 5  

Systematic Reviews volume  13 , Article number:  143 ( 2024 ) Cite this article

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The prevalence of psychosis has been shown to be disproportionately high amongst sexual and gender minority individuals. However, there is currently little consideration of the unique needs of this population in mental health treatment, with LGBTQA+ individuals facing barriers in accessing timely and non-stigmatising support for psychotic experiences. This issue deserves attention as delays to help-seeking and poor engagement with treatment predict worsened clinical and functional outcomes for people with psychosis. The present protocol describes the methodology for a scoping review which will aim to identify barriers and facilitators faced by LGBTQA+ individuals across the psychosis spectrum in help-seeking and accessing mental health support.

A comprehensive search strategy will be used to search Medline, PsycINFO, Embase, Scopus, LGBTQ+ Source, and grey literature. Original studies of any design, setting, and publication date will be included if they discuss barriers and facilitators to mental health treatment access and engagement for LGBTQA+ people with experiences of psychosis. Two reviewers will independently screen titles/abstracts and full-text articles for inclusion in the review. Both reviewers will then extract the relevant data according to pre-determined criteria, and study quality will be assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. Key data from included studies will be synthesised in narrative form according to the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews.

The results of this review will provide a comprehensive account of the current and historical barriers and facilitators to mental healthcare faced by LGBTQA+ people with psychotic symptoms and experiences. It is anticipated that the findings from this review will be relevant to clinical and community services and inform future research. Findings will be disseminated through publication in a peer-reviewed journal and presented at conferences.

Scoping review registration

This protocol is registered in Open Science Framework Registries ( https://doi.org/10.17605/OSF.IO/AT6FC ).

Peer Review reports

The prevalence of psychotic disorders in the general population has been estimated to be around 0.27–0.75% [ 1 , 2 ], with the lifetime prevalence of ever having a psychotic experience being estimated at 5.8% [ 3 ]. However, rates of psychotic symptoms and experiences are disproportionately high amongst LGBTQA+ populations, with non-heterosexual individuals estimated to be 1.99–3.75 times more likely to experience psychosis than their heterosexual peers [ 4 , 5 , 6 , 7 ]. Additionally, it has been estimated that transgender or gender non-conforming (henceforth trans) individuals are 2.46–49.7 times more likely than their cisgender peers (i.e. individuals whose gender identity is the same as their birth registered sex) to receive a psychotic disorder diagnosis [ 8 , 9 ]. The increased rates of psychotic experiences noted amongst gender and sexual minorities may be explained by evidence indicating that LGBTQA+ people are also exposed to risk factors for psychosis at a far greater rate than members of the general population, such as childhood adversity [ 10 , 11 , 12 ], minority stress [ 13 ], discrimination [ 14 ], and stigma [ 15 , 16 ]. Furthermore, there is added potential for diagnostic biases leading to over-diagnosing psychosis in gender diverse individuals, whose gender expression and dysphoria may be pathologized by mental health service providers [ 8 ].

Despite these concerning statistics, there is very little research examining the experiences of LGBTQA+ people with psychosis, and limited consideration of the unique needs these individuals may have in accessing and engaging with mental health services. While timely access to treatment has consistently been associated with better symptomatic and functional outcomes for people with psychosis [ 17 , 18 ], there are often delays to treatment initiation which are worsened for LGBTQA+ individuals [ 19 , 20 ]. These individuals face additional barriers to accessing adequate mental health support compared to cisgender/heterosexual people [ 19 ] and may need to experiment with several mental health services before finding culturally competent care [ 20 ]. This in turn may lead to longer duration of untreated psychosis. Additionally, there seems to be a lack of targeted support for this population from healthcare providers, with LGBTQA+ individuals with serious mental health concerns reporting higher rates of dissatisfaction with psychiatric services than their cisgender and heterosexual counterparts [ 7 , 14 , 21 ]. However, the extent of these differences varies across contexts [ 22 ], potentially due to improved education around stigma and LGBTQA+ issues within a subset of mental health services.

Nonetheless, stigma remains one of the highest cited barriers to help-seeking for mental health problems, particularly with regard to concerns around disclosure [ 23 ], which can be particularly challenging for people experiencing psychosis [ 24 , 25 ]. Stigma stress in young people at risk for psychosis is associated with less positive attitudes towards help-seeking regarding both psychiatric medication and psychotherapy [ 26 ], potentially partly due to fears of judgement and being treated differently by service providers [ 27 ]. This issue may be compounded for people who also belong to minoritized groups [ 23 , 28 ], particularly as LGBTQA+ individuals have reported experiencing frequent stigma and encountering uninformed staff when accessing mental healthcare [ 7 , 29 ]. Furthermore, stigma-fuelled hesitance to access services may be heightened for trans people [ 30 ] whose identities have historically been pathologized and conflated with experiences of psychosis [ 31 ].

Even when individuals manage to overcome barriers to access support, there are added challenges to maintaining adequate treatment engagement. In a large online study, half of trans and nearly one third of LGB participants reported having stopped using mental health services in the past because of negative experiences related to their gender identity or sexuality [ 20 ]. This can be particularly problematic as experiences of stigma predict poorer medication adherence in psychosis [ 32 ] which subsequently multiplies the risk for relapse and suicide [ 33 ]. While no research to date has explored non-adherence rates in people with psychosis who are LGBTQA+, concerns around suicidality are heightened for individuals who are gender and sexuality diverse [ 34 , 35 , 36 ].

Generally, there is rising demand for mental healthcare that specifically addresses the needs of gender and sexual minority individuals and promotes respect for diversity, equity, and inclusion [ 29 , 37 ]. This is particularly salient as positive relationships with staff are associated with better medication adherence for people with psychosis [ 38 ] and healthcare providers with LGBTQA+-specific mandates have demonstrated higher satisfaction rates for LGBTQA+ individuals [ 20 ]. Mental health services need to adapt treatment options to acknowledge minority stress factors for those with stigmatised identities and, perhaps more importantly, how these intersect and interact to increase inequalities in people from minoritized groups accessing and benefiting from treatment [ 37 , 39 ].

Additionally, gender affirming care needs to be recognised as an important facet of mental health treatment for many trans individuals, as it is associated with positive outcomes such as improvements in quality of life and psychological functioning [ 40 , 41 , 42 ] and reductions in psychiatric symptom severity and need for subsequent mental health treatment [ 8 , 43 ]. While there are additional barriers in access to gender affirming care for individuals with psychosis, this treatment has shown success in parallel with treatment to address psychosis symptom stabilisation [ 19 , 44 ]. The importance of affirmation is echoed by the finding that many negative experiences of LGBTQA+ participants with mental health services could be avoided simply by respecting people’s pronouns and using gender-neutral language [ 20 ].

To ensure timely access to appropriate treatment for LGBTQA+ people with psychosis, there is a need for improved understanding of the factors which challenge and facilitate help-seeking and engagement with mental health support. A preliminary search of Google Scholar, Medline, the Cochrane Database of Systematic Reviews, and PROSPERO was conducted and revealed no existing or planned reviews exploring benefits and/or obstacles to mental health treatment specific to this population. Therefore, the proposed review seeks to comprehensively search and appraise the existing literature to identify and summarise a range of barriers and facilitators to adequate mental health support faced by LGBTQA+ people with experiences of psychosis. This will allow for the mapping of the types of evidence available and identification of any knowledge gaps. Moreover, we hope to guide future decision-making in mental healthcare to improve service accessibility for LGBTQA+ individuals with psychosis and to set the foundations for future research that centres this marginalised population. Based on published guidance [ 45 , 46 , 47 ], a scoping review methodology was identified as the most appropriate approach to address these aims.

Selection criteria

This scoping review protocol has been developed in compliance with the JBI Manual for Evidence Synthesis [ 48 ] and, where relevant, the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist [ 49 ] (see Additional file 1). In the event of protocol amendments, the date, justification, and description for each amendment will be provided.

Due to the limited literature around the topic of this review, any primary original study design, setting, and publication date will be considered for inclusion. Publications written in English will be included, and articles in other languages may be considered pending time and cost constraints around translation. Publications will be excluded if the full text is not available upon request from authors.

The PCC (Population, Concept, Context) framework was used to develop the inclusion criteria for this scoping review:

This review will include individuals of any age who are LGBTQA+ and have had experiences of psychosis. For the purposes of this review, ‘LGBTQA+ individuals’ will be broadly defined as any individual that is not heterosexual and/or cisgender or anyone who engages in same-gender sexual behaviour. Studies may include participants who are cisgender and heterosexual if they separately report outcomes for LGBTQA+ individuals. Within this review, the term ‘psychosis’ includes (i) any diagnosis of a psychotic disorder, such as schizophrenia spectrum disorders, mood disorders with psychotic features, delusional disorders, and drug-induced psychotic disorders, (ii) sub-threshold psychotic symptoms, such as those present in ultra-high risk (UHR), clinical high risk (CHR), or at risk mental state (ARMS) individuals, and (iii) any psychotic-like symptoms or experiences. Studies may include participants with multiple diagnoses if they separately report outcomes for individuals on the psychosis spectrum.

This review will include publications which discuss potential barriers and/or facilitators to mental health help-seeking and/or engagement with mental health treatment. ‘Barriers’ will be operationalised as any factors which may delay or prevent individuals from accessing and engaging with appropriate mental health support. These may include lack of mental health education, experienced or internalised stigma, experiences of discrimination from health services, and lack of inclusivity in health services. ‘Facilitators’ will be operationalised as any factors which may promote timely help-seeking and engagement with sources of support. These may include improved access to mental health education, positive sources of social support, and welcoming and inclusive services. Mental health help-seeking will be broadly defined as any attempt to seek and access formal or informal support to address a mental health concern related to experiences of psychosis (e.g. making an initial appointment with a service provider, seeking help from a friend). Mental health treatment engagement will be broadly defined as adherence and active participation in the treatment that is offered by a source of support (e.g. attending scheduled appointments, taking medication as prescribed, openly communicating with service providers).

This review may include research encompassing any setting in which mental healthcare is provided. This is likely to include formal healthcare settings such as community mental health teams or inpatient clinics as well as informal settings such as LGBTQA+ spaces or informal peer support. Studies will be excluded if they focus exclusively on physical health treatment.

Search strategy

Database searches will be conducted in Medline, PsycINFO, Embase, Scopus, and LGBTQ+ Source. The full search strategy for this protocol is available (see Additional file 2). This strategy has been collaboratively developed and evaluated by a scholarly services health librarian. Searches will include subject headings relevant to each database and title/abstract keywords relating to three main concepts: (i) LGBTQA+ identity, (ii) experiences of psychosis, and (iii) mental health treatment. Keywords for each concept will be combined using the Boolean operator ‘OR’, and the three concepts will be combined using ‘AND’. This search strategy was appropriately translated for each of the selected databases. There will be no limitations on language or publication date at this stage to maximise the breadth of the literature captured. Publications returned from these searches will be exported to EndNote. Searches will be re-run prior to the final analysis to capture any newly published studies.

The database searches will be supplemented by searching the grey literature as per the eligibility criteria detailed above. These may include theses and dissertations, conference proceedings, reports from mental health services, and policy documents from LGBTQA+ groups. Google and Google Scholar will be searched using a combination of clauses for psychosis (Psychosis OR psychotic OR schizophrenia OR schizoaffective), treatment (treatment or “help-seeking”), and queer identity. The latter concept will have three clauses for three separate searches, with one including broad queer identity (LGBT), one specific to non-heterosexual individuals (gay OR lesbian OR homosexual OR bisexual OR queer OR asexual), and one specific to trans individuals (transgender OR transsexual OR transexual OR “non-binary” OR “gender minority”). Additionally, reference lists and citing literature will be manually searched for each paper included in the review to capture any articles and policy documents not previously identified.

Data selection

Search results will be imported into Covidence using EndNote, and duplicates will be eliminated. Titles and abstracts will be screened by the first and second authors according to pre-defined screening criteria, which will be discussed by the authors and piloted prior to screening. These criteria will consider whether the articles included LGBTQA+ participants with experiences of psychosis (as operationalised above) in relation to mental health help-seeking and/or treatment. Full texts of relevant articles will then be obtained and screened by the first and second reviewer in accordance with the full inclusion and exclusion criteria after initial piloting to maximise inter-rater reliability. Decisions on inclusion and exclusion will be blinded and recorded on Covidence. Potential discrepancies will be resolved through discussion, and when consensus cannot be reached, these will be resolved by the supervising author. The process of study selection will be documented using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram [ 50 ].

Data extraction

Data extraction will be performed independently by two reviewers using Covidence. Prior to beginning final extraction, both reviewers will independently pilot the extraction tool using a sample of five included studies and discuss any necessary changes. Information extracted is planned to include the following: title, author name(s), year of publication, country in which the study was conducted, study design, sample size, population of focus (i.e. sexual minorities, gender minorities, or both), sample demographics (i.e. age, gender identity, and sexual orientation), setting (e.g. early intervention service, community mental health team, etc.), psychosis characteristics (e.g. diagnoses included, severity of symptoms, etc.), type of treatment (e.g. cognitive behavioural therapy, antipsychotic medication, etc.), and any barriers and/or facilitators identified according to the aforementioned operationalised definitions. Disagreements will be resolved through discussion between the two reviewers and, when necessary, final decisions will be made by a senior supervisor. Once extracted, information will be recorded in Excel. Lead authors of papers will be contacted by the primary review author in cases where there is missing or insufficient data.

Quality assessment

Due to the expected heterogeneity in the types of studies that may be included in this review (e.g. qualitative studies, randomised controlled trials, case control studies, case reports), the relevant revised Joanna Briggs Institute (JBI) critical appraisal checklists [ 51 ] will be used to assess risk of bias and study quality for each study design. Two reviewers will independently use these checklists to assess each paper that is included following the full-text screening. If there are discrepancies in article ratings, these will be resolved through discussion between the two authors. If no consensus is reached, discrepancies will be resolved by a senior supervisor. In line with the scoping nature of this review, low-quality studies will not be excluded from the synthesis.

Evidence synthesis

Data from included studies will be synthesised using a narrative synthesis approach in accordance with the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews [ 52 ]. A preliminary descriptive synthesis will be conducted by tabulating the extracted data elements from each study alongside quality assessment results and developing an initial description of the barriers and facilitators to (1) accessing and (2) engaging with mental health support that are identified in the literature. This initial synthesis will then be interrogated and refined to contextualise these barriers and facilitators in the setting, population, and methodology of each study to form the basis for an interpretative synthesis.

This review will not use a pre-existing thematic framework to categorise barriers and facilitators as it is expected that the factors identified will not neatly fit into existing criteria. Instead, these will be conceptualised according to overarching themes as interrelated factors, so that potentially complex interactions between barriers and facilitators within and across relevant studies may be explored through concept mapping. If most of the studies included are qualitative, there may also be scope for a partial meta-synthesis. To avoid oversimplifying the concept of ‘barriers and facilitators’ (see criticism by Bach-Mortensen & Verboom [ 53 ]), this data synthesis will be followed by a critical reflection of the findings through the lens of the socio-political contexts which may give rise to the barriers and facilitators identified, exploring the complexities necessary for any changes to be implemented in mental health services.

If the extracted data indicate that gender minority and sexual minority individuals experience unique or different barriers and/or facilitators to each other, these population groups will be analysed separately as opposed to findings being generalised across the LGBTQA+ spectrum. Furthermore, if there is scope to do so, analyses may be conducted to investigate how perceived barriers and facilitators for this population may have changed over time (i.e. according to publication date) as definitions of psychosis evolve and LGBTQA+ individuals gain visibility in clinical services.

The proposed review will add to the literature around mental health treatment for LGBTQA+ people with psychosis. It will provide a thorough account of the barriers and facilitators to accessing and engaging with support faced by this population and may inform future research and clinical practice.

In terms of limitations, this review will be constrained by the existing literature and may therefore not be sufficiently comprehensive in reflecting the barriers and facilitators experienced by subgroups within the broader LGBTQA+ community. Additionally, although broad inclusion criteria are necessary to capture the full breadth of research conducted in this topic, included studies are likely to be heterogeneous and varied in terms of their methodology and population which may complicate data synthesis.

Nonetheless, it is anticipated that the findings from this review will provide the most comprehensive synthesis to date of the issues driving low help-seeking and treatment engagement in people across the psychosis spectrum who are LGBTQA+. This review will likely also identify gaps in the literature which may inform avenues for future research, and the factors identified in this review will be considered in subsequent research by the authors.

Additionally, findings will be relevant to healthcare providers that offer support to people with psychosis who may have intersecting LGBTQA+ identities as well as LGBTQA+ organisations which offer support to LGBTQA+ people who may be experiencing distressing psychotic experiences. These services are likely to benefit from an increased awareness of the factors which may improve or hinder accessibility for these subsets of their target populations. Therefore, results from this review may inform decision-making around the implementation of service-wide policy changes.

The findings of this review will be disseminated through the publication of an article in a peer-reviewed journal and presented at relevant conferences in Australia and/or internationally. Additionally, the completed review will form part of the lead author’s doctoral thesis.

Availability of data and materials

Not applicable for this protocol.

Abbreviations

• At risk mental state

Clinical high risk for psychosis

Joanna Briggs Institute

Lesbian, gay, and bisexual

Lesbian, gay, bisexual, transgender, queer or questioning, asexual or aromantic, and more

Population, Concept, Context

Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols

Ultra-high risk for psychosis

Institute for Health Metrics and Evaluation (IHME). Global Burden of Disease Study (GBD) Results. Seattle, WA: IHME, University of Washington. 2020. https://vizhub.healthdata.org/gbd-results/ . Accessed 26 May 2023

Moreno-Kustner B, Martin C, Pastor L. Prevalence of psychotic disorders and its association with methodological issues. A systematic review and meta-analyses. PLoS One. 2018;13(4):e0195687. https://doi.org/10.1371/journal.pone.0195687 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

McGrath JJ, Saha S, Al-Hamzawi A, Alonso J, Bromet EJ, Bruffaerts R, et al. Psychotic experiences in the general population: a cross-national analysis based on 31 261 respondents from 18 countries. JAMA Psychiatry. 2015;72(7):697–705. https://doi.org/10.1001/jamapsychiatry.2015.0575 .

Article   PubMed   PubMed Central   Google Scholar  

Chakraborty A, McManus S, Brugha TS, Bebbington P, King M. Mental health of the non-heterosexual population of England. Br J Psychiatry. 2011;198(2):143–8. https://doi.org/10.1192/bjp.bp.110.082271 .

Article   PubMed   Google Scholar  

Gevonden M, Selten J, Myin-Germeys I, De Graaf R, Ten Have M, Van Dorsselaer S, et al. Sexual minority status and psychotic symptoms: findings from the Netherlands Mental Health Survey and Incidence Studies (NEMESIS). Psychol Med. 2014;44(2):421–33. https://doi.org/10.1017/S0033291713000718 .

Article   CAS   PubMed   Google Scholar  

Jacob L, Smith L, McDermott D, Haro JM, Stickley A, Koyanagi A. Relationship between sexual orientation and psychotic experiences in the general population in England. Psychol Med. 2021;51(1):138–46. https://doi.org/10.1017/S003329171900309X .

Welch S, Collings SCD, Howden-Chapman P. Lesbians in New Zealand: their mental health and satisfaction with mental health services. Aust N Z J Psychiatry. 2000;34(2):256–63. https://doi.org/10.1080/j.1440-1614.2000.00710.x .

Barr SM, Roberts D, Thakkar KN. Psychosis in transgender and gender non-conforming individuals: a review of the literature and a call for more research. Psychiatry Res. 2021;306:114272. https://doi.org/10.1016/j.psychres.2021.114272 .

Hanna B, Desai R, Parekh T, Guirguis E, Kumar G, Sachdeva R. Psychiatric disorders in the U.S. transgender population. Ann Epidemiol. 2019;39:1–7. https://doi.org/10.1016/j.annepidem.2019.09.009 .

Schneeberger AR, Dietl MF, Muenzenmaier KH, Huber CG, Lang UE. Stressful childhood experiences and health outcomes in sexual minority populations: a systematic review. Soc Psychiatry Psychiatr Epidemiol. 2014;49:1427–45. https://doi.org/10.1007/s00127-014-0854-8 .

Stanton KJ, Denietolis B, Goodwin BJ, Dvir Y. Childhood trauma and psychosis: an updated review. Child Adolesc Psychiatr Clin N Am. 2020;29(1):115–29. https://doi.org/10.1016/j.chc.2019.08.004 .

Varese F, Smeets F, Drukker M, Lieverse R, Lataster T, Viechtbauer W, et al. Childhood adversities increase the risk of psychosis: a meta-analysis of patient-control, prospective- and cross-sectional cohort studies. Schizophr Bull. 2012;38(4):661–71. https://doi.org/10.1093/schbul/sbs050 .

Mongelli F, Perrone D, Balducci J, Saccheti A, Ferrari S, Mattei G, et al. Minority stress and mental health among LGBT populations: an update on the evidence. Minerva Psichiatr. 2019;60(1):27–50. https://doi.org/10.23736/S0391-1772.18.01995-7 .

Article   Google Scholar  

Kidd SA, Howison M, Pilling M, Ross LE, McKenzie K. Severe mental illness in LGBT populations: a scoping review. Psychiatr Serv. 2016;67(7):779–83. https://doi.org/10.1176/appi.ps.201500209 .

Hatzenbuehler ML, Pachankis JE. Stigma and minority stress as social determinants of health among lesbian, gay, bisexual, and transgender youth. Pediatr Clin North Am. 2016;63(6):985–97. https://doi.org/10.1016/j.pcl.2016.07.003 .

Rüsch N, Heekeren K, Theodoridou A, Müller M, Corrigan PW, Mayer B, et al. Stigma as a stressor and transition to schizophrenia after one year among young people at risk of psychosis. Schizophr Res. 2015;166(1–3):43–8. https://doi.org/10.1016/j.schres.2015.05.027 .

Howes OD, Whitehurst T, Shatalina E, Townsend L, Onwordi EC, Mak TLA, et al. The clinical significance of duration of untreated psychosis: an umbrella review and random-effects meta-analysis. World Psychiatry. 2021;20(1):75–95. https://doi.org/10.1002/wps.20822 .

McGorry PD. Early intervention in psychosis: obvious, effective, overdue. J Nerv Ment Dis. 2015;203(5):310–308. https://doi.org/10.1097/NMD.0000000000000284 .

Peta JL. The Oxford Handbook of Sexual and Gender Minority Mental Health. Oxford (GB): Oxford University Press; 2020. Chapter 11, Schizophrenia spectrum and other psychotic disorders among sexual and gender minority populations; 125-134. Available from: The Oxford Handbook of Sexual and Gender Minority Mental Health - Google Books. Accessed 01 Jun 2023

Simeonov D, Steele LS, Anderson S, Ross LE. Perceived satisfaction with mental health services in the lesbian, gay, bisexual, transgender, and transsexual communities in Ontario, Canada: an internet-based survey. Can J Commun Ment Health. 2015;34(1):31–44. https://doi.org/10.7870/cjcmh-2014-037 .

Avery AM, Hellman RE, Sudderth LK. Satisfaction with mental health services among sexual minorities with major mental illness. Am J Public Health. 2001;91(6):990–1. https://doi.org/10.2105/AJPH.91.6.990 .

Plöderl M, Mestel R, Fartacek C. Differences by sexual orientation in treatment outcome and satisfaction with treatment among inpatients of a German psychiatric clinic. PLoS ONE. 2022;17(1):e0262928. https://doi.org/10.1371/journal.pone.0262928 .

Clement S, Schauman O, Graham T, Maggioni F, Evans-Lacko S, Bezborodovs N, et al. What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychol Med. 2015;45(1):11–27. https://doi.org/10.1017/S0033291714000129 .

Pyle M, Morrison AP. “It’s just a very taboo and secretive kind of thing”: making sense of living with stigma and discrimination from accounts of people with psychosis. Psychosis. 2014;6(3):195–205. https://doi.org/10.1080/17522439.2013.834458 .

Wood L, Burke E, Byrne R, Pyle M, Chapman N, Morrison AP. Stigma in psychosis: a thematic synthesis of current qualitative evidence. Psychosis. 2015;7(2):152–65. https://doi.org/10.1080/17522439.2014.926561 .

Rüsch N, Heekeren K, Theodoridou A, Dvorsky D, Müller M, Paust T, et al. Attitudes towards help-seeking and stigma among young people at risk for psychosis. Psychiatry Res. 2013;210(3):1313–5. https://doi.org/10.1016/j.psychres.2013.08.028 .

Gronholm PC, Thornicroft G, Laurens KR, Evans-Lacko S. Mental health-related stigma and pathways to care for people at risk of psychotic disorders or experiencing first-episode psychosis: a systematic review. Psychol Med. 2017;47(11):1867–79. https://doi.org/10.1017/S0033291717000344 .

Rossman K, Salamanca P, Macapagal K. A qualitative study examining young adults’ experiences of disclosure and nondisclosure of LGBTQ identity to health care providers. J Homosex. 2017;64(10):1390–410. https://doi.org/10.1080/00918369.2017.1321379 .

Rees SM, Crowe M, Harris S. The lesbian, gay, bisexual and transgender communities’ mental health care needs and experiences of mental health services: an integrative review of qualitative studies. J Psychiat Mental Health Nurs. 2020;28(4):578–89. https://doi.org/10.1111/jpm.12720 .

Shipherd JC, Green KE, Abramovitz A. Transgender clients: identifying and minimizing barriers to mental health treatment. J Gay Lesbian Ment Health. 2010;14(2):94–108. https://doi.org/10.1080/19359701003622875 .

Hoening J, Kenna JC. The nosological position of transsexualism. Arch Sex Behav. 1974;3:273–87. https://doi.org/10.1007/BF01541490 .

Eliasson ET, McNamee L, Swanson L, Lawrie SM, Schwannauer M. Unpacking stigma: meta-analyses of correlates and moderators of personal stigma in psychosis. Clin Psychol Rev. 2021;89:102077. https://doi.org/10.1016/j.cpr.2021.102077 .

Lally J, MacCabe JH. Antipsychotic medication in schizophrenia: a review. Br Med Bull. 2015;114(1):169–79. https://doi.org/10.1093/bmb/ldv017 .

De Lange J, Baams L, van Bergen D, Bos HMW, Bosker RJ. Minority stress and suicidal ideation and suicide attempts among LGBT adolescents and young adults: a meta-analysis. LGBT Health. 2022;9(4):222–37. https://doi.org/10.1089/lgbt.2021.0106 .

Skerrett DM, Kolves K, De Leo D. Are LGBT populations at higher risk for suicidal behaviours in Australia? Research findings and implications. J Homosex. 2015;62(7):883–901. https://doi.org/10.1080/00918369.2014.1003009 .

Strauss P, Cook A, Winter S, Watson V, Toussaint DW, Lin A. Trans Pathways: the mental health experiences and care pathways of trans young people: summary of results. Perth, Australia: Telethon Kids Institute. 2017. trans-pathways-report.pdf (telethonkids.org.au). Accessed 16 June 2023

DeLuca JS, Novacek DM, Adery LH, Herrera SN, Landa Y, Corcoran CM, et al. Equity in mental health services for youth at clinical high risk for psychosis: considering marginalized identities and stressors. Evid Based Pract Child Adolesc Ment Health. 2022;7(2):176–97. https://doi.org/10.1080/23794925.2022.2042874 .

Day JC, Bentall RP, Roberts C, Randall F, Rogers A, Cattell D, et al. Attitudes toward antipsychotic medication: the impact of clinical variables and relationships with health professionals. Arch Gen Psychiatry. 2005;62(7):717–24. https://doi.org/10.1001/archpsyc.62.7.717 .

Coyne CA, Poquiz JL, Janssen A, Chen D. Evidence-based psychological practice for transgender and non-binary youth: defining the need, framework for treatment adaptation, and future directions. Evid Based Pract Child Adolesc Ment Health. 2020;5(3):340–53. https://doi.org/10.1080/23794925.2020.1765433 .

Baker KE, Wilson LM, Sharma R, Dukhanin V, McArthur K, Robinson KA. Hormone therapy, mental health, and quality of life among transgender people: a systematic review. J Endocr Soc. 2021;5(4):bvab011. https://doi.org/10.1210/jendso/bvab011 .

Hughto JMW, Reisner SL. A systematic review of the effects of hormone therapy on psychological functioning and quality of life in transgender individuals. Transgend Health. 2016;1(1):21–31. https://doi.org/10.1089/trgh.2015.0008 .

Wernick JA, Busa S, Matouk K, Nicholson J, Janssen A. A systematic review of the psychological benefits of gender-affirming surgery. Urol Clin North Am. 2019;46(4):475–86. https://doi.org/10.1016/j.ucl.2019.07.002 .

Bränström R, Packanhkis JE. Reductions in mental health treatment utilization among transgender individuals after gender-affirming surgeries: a total population study. Am J Psychiatry. 2019;177(8):727–34. https://doi.org/10.1176/appi.ajp.2019.19010080 .

Meijer JH, Eeckhout GM, van Vlerken RHT, de Vries ALC. Gender dysphoria and co-existing psychosis: review and four case examples of successful gender affirmative treatment. LGBT Health. 2017;4(2):106–14. https://doi.org/10.1089/lgbt.2016.0133 .

Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143. https://doi.org/10.1186/s12874-018-0611-x .

Munn Z, Pollock D, Khalil H, Alexander L, McInerney P, Godfrey CM, et al. What are scoping reviews? Providing a formal definition of scoping reviews as a type of evidence synthesis. JBI Evid Synth. 2022;20(4):950–2. https://doi.org/10.11124/JBIES-21-00483 .

Peters MDJ, Marnie C, Colquhoun H, Garritty CM, Hempel S, Horsley T, et al. Scoping reviews: reinforcing and advancing the methodology and application. Syst Rev. 2021;10(1):263. https://doi.org/10.1186/s13643-021-01821-3 .

Aromataris E, Lockwood C, Porritt K, Pilla B, Jordan Z, editors. JBI Manual for Evidence Synthesis. JBI; 2024. https://synthesismanual.jbi.global . https://doi.org/10.46658/JBIMES-24-01

Shamseer L, Moher D, Clarke M, Ghersi D, Liberati A, Petticrew M, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ. 2015;350: g7647. https://doi.org/10.1136/bmj.g7647 .

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Syst Rev. 2021;372:n71. https://doi.org/10.1136/bmj.n71 .

Barker TH, Stone JC, Sears K, Klugar M, Leonardi-Bee J, Tufanaru C, et al. Revising the JBI quantitative critical appraisal tools to improve their applicability: an overview of methods and the development process. JBI Evid Synth. 2023;21(3):478–93. https://doi.org/10.11124/JBIES-22-00125 .

Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M, et al. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme. Lancaster University; 2006. https://doi.org/10.13140/2.1.1018.4643

Bach-Mortensen AM, Verboom B. Barriers and facilitators systematic reviews in health: a methodological review and recommendations for reviewers. Res Synth Methods. 2020;11(6):743–59. https://doi.org/10.1002/jrsm.1447 .

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Acknowledgements

The authors would like to acknowledge the support of Ms Olivia Larobina, Scholarly Services Librarian (STEMM) at Deakin University, in the development of the search strategy.

CCG is funded by a Deakin University Postgraduate Research (DUPR) Scholarship. ZW is funded by a University of Western Australia Research Training Program (RTP) Scholarship. AL is supported by a National Health and Medical Research Council (NHMRC) Emerging Leaders Fellowship (2010063). LJW is supported by a NHMRC Emerging Leaders Fellowship (1174060). ARY is supported by a NHMRC Principal Research Fellowship (1136829). The funding providers had no role in the design and conduct of the study, or in the preparation, review, or approval of this manuscript.

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Telethon Kids Institute, University of Western Australia, Perth, WA, 6009, Australia

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Gonçalves, C.C., Waters, Z., Quirk, S.E. et al. Barriers and facilitators to mental health treatment access and engagement for LGBTQA+ people with psychosis: a scoping review protocol. Syst Rev 13 , 143 (2024). https://doi.org/10.1186/s13643-024-02566-5

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Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study

• Priscilla Namaganda 1 ,
• Patience Nantume 2 ,
• Kelvin Roland Mubiru 3 ,
• Adelliine Twimukye 2 &
• Christine Sekaggya Wiltshire 2  

BMC Health Services Research volume  24 , Article number:  666 ( 2024 ) Cite this article

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In 2016, Uganda added Hydroxyurea (HU) to the list of essential drugs to treat sickle cell disease SCD. However, Hydroxyurea utilization has been low for several countries in sub-Saharan Africa. This study examined patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, in Uganda.

To understand the patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease, we conducted a parallel convergent mixed methods study at outpatient departments of two national referral hospitals in Uganda from October 2022 to January 2023. The cross-sectional mixed-methods study employed both quantitative and qualitative methods. We collected survey data from a systematic sample of 259 participants and conducted individual interviews with a purposive sample of 40 participants (20 adolescents or their caregivers and 20 adult patients with SCD) and interviewed them individually on their knowledge, perceptions, barriers, and facilitators of HU utilization. Descriptive data were analyzed using Stata 16, whereas qualitative data were analyzed thematically using an inductive approach supported by NVivo 12 software. We triangulated data to determine the concordance of qualitative and quantitative data.

The study enrolled 40 participants for qualitative interviews and 259 patients for quantitative, with an average age of 16, over half being female, 46% having secondary education, and 96% unmarried. The prevalence of HU use was 78%. The study identified three themes as follows: Patient barriers at the individual including Inadequate knowledge about HU, Persistent pain, Poor adherence to HU, Poor communication with health care workers, and Psychosocial and emotional challenges. At the facility level, long queues and poor quality of care, drug-related side effects that affect HU, and drug stock-outs were reported. Myths, rumors, and misconceptions about HU, and gender-related barriers were reported to affect HU utilization at a community level. Facilitators for the use of HU and recommendations for improvement. Facilitators included perceived benefits, long duration on HU, information sharing by healthcare workers, availability of complementary drugs, confirmation of diagnosis, and availability of medication at public health facilities or private pharmacies. Patients suggested continuous adherence support, encouragement from healthcare workers, sensitization about benefits and risks, a peer-to-peer approach, and financial support for adolescents and women to start businesses to resolve financial problems.

Implementing the use of HU has been challenging in Uganda and needs improvement. Facilitators to hydroxyurea use have been highlighted, though Patient-identified barriers at individual, facility, and community levels that need to be resolved. The experiences and insights shared by our participants provide invaluable guidance for increasing the uptake of HU. Further studies are needed to establish validated instruments to assess patients’ pain communication and adherence to the HU regimen.

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In Africa, sickle cell disease (SCD) contributes substantially to mortality in children younger than 5 years. The global burden has been quantified, with SCD accounting for 6.4% of the under-5 mortality across all of Africa [ 1 ]. However, in countries with greater sickle allele frequencies and lower childhood mortality rates, such as Uganda, SCD may account for up to 15% of under-5 mortality [ 2 ]. The mortality rate in adult patients with SCD is not known presumably because of a lack of accurate data but is thought to be high as more children with SCD survive into adolescence and adulthood, they are faced with poor access to comprehensive sickle cell care with a continuing risk of complications or death [ 2 ].

Hydroxyurea is one of the approved drugs for treating sickle cell disease [ 3 ]. The mechanism by which hydroxyurea works is rather unknown although its efficacy in the treatment of SCD is generally attributed to its ability to boost the levels of fetal hemoglobin (Hb F, α 2 γ 2 ) hence lowering the concentration of HbS. HbF is protective against clinical severity, and low-percentage HbF is associated with a higher risk of developing Vaso-occlusive complications, organ damage, and early death. Systemic review studies have documented the efficacy of hydroxyurea in adult patients with SCD [ 3 ]. In Uganda, the NOHARM and REACH studies reported a reduction in SCD-related complications with the use of hydroxyurea and appeared to be safe for children with SCD without increased severe malaria, infections, or adverse events [ 4 , 5 ].

Hydroxyurea was added to the list of essential drugs in Uganda in 2016 but it is not readily available [ 6 ].

The number of patients with SCD currently taking hydroxyurea is about 33%; this is undocumented data from patient charts. This low percentage of use could be due to limited access and availability of drugs, practitioners’ low knowledge of HU use, and patients’ fear of drug toxicities. Therefore, this study sought to assess barriers to HU treatment among this cohort of patients and document them. This study focused on knowledge, perceptions, barriers, and facilitators of adolescent and adult patients with sickle cell disease regarding HU because there is minimal data and even the data that is available focuses on children, not adults. Reasons reported by authors in studies done included fear of cancer and other side effects, not wanting to take a medication, not wanting to have required laboratory monitoring, or not thinking the medication would work [ 7 ]. The primary goal and benefit of patient-centered care is to improve individual health outcomes, not just population health outcomes, although population outcomes may also improve [ 8 ]. Not only do patients benefit, but providers and healthcare systems benefit as well, through (a) Improved satisfaction among patients and their families, (b) Enhanced reputation of providers among healthcare consumers, (c) Better morale and productivity among clinicians and ancillary staff, (d) Improved resource allocation, (e) Reduced expenses and increased financial margins throughout the continuum of care [ 8 ].

With greater use of HU for eligible patients, it is expected that fewer patients will be hospitalized for complications of SCD, resulting in a net reduction of national healthcare costs for patients with SCD [ 9 ]. In addition, the broader appropriate use of HU in patients with SCD should improve their quality of life and productivity [ 9 ]. With this information, we can lobby the government and/or donors to avail recourses for continued supply of HU and other resources like laboratory capacity that aid us in giving comprehensive care to patients with SCD. Therefore, we conducted a mixed methods study to identify the knowledge, perceptions, barriers, and facilitators of adolescent and adult patients with sickle cell disease regarding HU and suggest interventions to facilitate HU uptake in Uganda. We hypothesized that there was a relationship between patient-related barriers and hydroxyurea use among patients with SCD.

Study design

From October 2022 to January 2023, we conducted a cross-sectional mixed-methods study (parallel convergent) with qualitative components using a phenomenological approach.

Study setting

The study was conducted at the Sickle cell clinic in Mulago Hospital sickle cell clinic and Kiruddu Hospital, hematology. The Sickle Cell Clinic is an innovation for treating children with SCA with acute pain and other medical complications as outpatients. The Mulago sickle cell clinic attends to children, adolescents, and adult patients with SCD. The Kiruddu clinic attends to adolescent and adult patients with SCD in addition to other hematological conditions. Both Mulago and Kiruddu are national referral hospitals in Uganda and are teaching hospitals for Makerere University, College of Health Sciences. The Mulago SCD clinic cares for more than 300 patients with SCD. The hematology clinic at Kiruddu Hospital cares for 100 to 150 patients with SCD.

Sample size estimation

We purposively selected 40 participants to participate in the qualitative interviews. The actual sample size (40) was determined by how many participants were required to explore all the research questions and to achieve thematic saturation. It was difficult to determine the ideal sample size for achieving these objectives at the early stage of the research. Therefore, the process of participant selection was iterative, involving several rounds of selection and interviews as will be necessary to achieve thematic saturation. Data was collected until no new themes or patterns emerged from participants interviewed participants selected from each study site. 20 individual interviews were carried out in each selected site, making a total of 40 Individual interviews from two study sites. Patients were interviewed to identify the barriers to the use of hydroxyurea through In-depth interviews using an in-depth interview form developed for the study with 20 purposively selected patients per site. The criteria for the selection of patients for in-depth interviews were 10 adults (5 males and 5 females), and 10 adolescents (5 males and 5 females) who have ever missed appointments or drugs from each clinic. Also, their understanding, experiences, and what they had heard regarding using Hydroxyurea were assessed. All the interviews were conducted from the hospital premises and in a language preferred by the participants and audio recorded. All adolescents were interviewed with their caretakers and each caretaker signed a parent-guardian consent form in addition to the adolescent signing an assent form.

Eligibility for HU use was (a) Three or more sickle cell-associated moderate to severe pain crises in 12 months, requiring hospitalization or management at a health facility, (b) Sickle cell-associated pain that interferes with daily activities and quality of life, (c) History of severe and/or recurrent acute chest syndrome, (d) Severe symptomatic chronic anemia that interferes with daily activities or quality of life(severe symptomatic anemia criteria was assessed based on the need for blood transfusion). if participants responded yes to any of the above criteria, they were eligible for HU use. Patients with other sickle cell syndromes – e.g., Hb SC disease, S/ß thalassemia, pregnant, severely ill study, and declined to participate in the study were excluded.

The sample size for quantitative was estimated using Leslie Kish’s (1964) formula for sample size calculation. With a prevalence of HU use at 33.7% as reported by a study done in Oman [ 10 ] and at a 0.05 level of significance, the sample was estimated at 260 participants. The sickle cell clinic at Mulago Hospital runs daily and that at Kiruddu on Thursday of every week. Patients with SCD who came for assessment were screened using a questionnaire developed for the study and each one of them was informed about the study with the help of a research assistant. Patients who are taking HU or have taken HU were recorded. Patients who are not taking HU were assessed to determine if they fit the criteria for starting HU as described above. If participants responded to any of the above criteria, they were enrolled in the study after obtaining informed consent from research assistants. Patients enrolled were asked to fill out a standardized questionnaire with the help of research assistants. Information obtained included (a) demographic i.e. age, gender, address, level of education, religion, and occupation, (b) time when patient joined the clinic, past and current medications, history of SCD-associated complications and history of admissions, (c) status of HU use and reasons for not initiating HU and possible solutions to these challenges.

Study variables

Independent variables.

We collected data on; age, gender, address, level of education, religion, occupation, commonest complications of SCD experienced, indications for HU use, and the common medications used.

Dependent variables

Our outcomes were willingness to use HU, perceptions about HU use, reasons for not initiating HU and possible solutions to these challenges.

Procedures for data collection and instruments

Quantitative data.

We used a systematic sampling method for the survey. For the quantitative objective, all patients with SCD were screened and those who met the inclusion criteria were enrolled in the study. We therefore included every 4th participant in the survey beginning with the 4th adult until the sample size was attained. We used maximum variation purposive sampling to select the participants for the in-depth interviews. For the survey, we used an interviewer-administered semi-structured questionnaire to collect data on the 259 participants using a questionnaire administered by a research assistant. For the 40 individual interviews, we used an interview guide which was used to collect perceptions on HU. Interviews lasted approximately 10–20 min. Data collection occurred over three months and transcription began as data collection was ongoing.

Data quality control

The questionnaire was pre-tested on 5 participants from the same community to ensure that the questions were clear and understandable to participants. The Questionnaires and Interview guide were translated into the local language and then back-translated to English as part of standard operating procedures such that they have retained their meaning. The research assistants were adequately trained for 7 days and routinely supervised while in the field and the data they were collecting by the principal investigator to ensure the correct use of data collection tools and adherence to ethical principles.

To ensure reliability, we set clear research questions to expand on responses. Qualitative data was collected separately from quantitative data (parallel convergence). Codes and qualitative findings were crosschecked to improve reliability. Consensus between two or more observers was done to establish reliability. We used NVivo version 12 software to manage narrative data.

To ensure validity, all transcripts were checked for accuracy and completeness by the interviewers to enhance data validity. Feedback from research participants (member check) after analysis and interpretation was obtained in an organized results dissemination workshop. Documentation of member checks and interpretations that were changed because of member feedback was done. Triangulation combined quantitative (survey) and qualitative data collection methods (in-depth interviews) in this single study. Triangulation of various data collection methods was used. These included questionnaires, Topic guides (In-depth interviews), transcripts, field notes, and Literature review. This was aimed at verifying information, or facts obtained from using other methods.

Data management and analysis

Quantitative data collected were double-entered into the computer using EPI-DATA (version 3.1) software to minimize data entry errors. Data was exported to STATA version 15 for data cleaning and analysis. Data was then backed up and archived using codes to ensure confidentiality. The descriptive characteristics were presented using frequencies and percentages or proportions in tables. Numerical data was summarized using means and standard deviations for normally distributed continuous data or medians and interquartile ranges for continuous but skewed variables. The prevalence of hydroxyurea use among adult patients was calculated as a proportion of adult patients with SCD who have ever used hydroxyurea out of the total number of participants who are eligible for HU use with its 95% confidence intervals.

The Qualitative study was guided by the ethical principles of the Association of Social Anthropologists. These principles included protecting research participants, anticipating harm, avoiding undue intrusion, rights to confidentiality and anonymity, intellectual property rights, and participant involvement in research. Recording and storing participants’ information was done in a manner that facilitated greater confidentiality and anonymity, including the use of pseudonyms to describe participants during interviews, separation of participants’ ID information from their transcripts, storage of participant information in secured locations and password-protected hard drives, removal of participants names in all research dissemination outputs. Research assistants obtained informed consent prior to start of individual interviews. The Individual interviews were conducted in one-to-one and face-to-face format to provide greater privacy and assure participants of confidentiality. We conducted an inductive thematic analysis collected from individual interviews with different respondent categories such as (20 adolescents or their caregivers and 20 adult patients with SCD). The analysis examined meanings, themes, and patterns that manifested texts from the interviews regarding HU use in two hospitals in Uganda. All audio recordings from open-ended questions based on interview guides were transcribed verbatim. Two coders Individually read each transcript line by line and identified key concepts to develop a coding framework. A coding framework based on eight transcripts that were manually reviewed and coded to generate the initial set of codes that were crosschecked iteratively between two coders (AT & PN) for consensus and to improve reliability. All transcripts were imported into NVivo version 12 software for open coding and management of data. An initial codebook was developed, and the revised codes were grouped into categories and identified themes. Illustrative quotations for each emergent theme were selected for the results narration.

283 participants were assessed and 259 were enrolled in the study as shown in the flow chart, Fig.  1 .

Flow chart showing enrolment profile

Characteristics of adults and adolescents

The total sample size was 259, 221 participants were recruited from the Mulago Hospital sickle cell clinic and 38 from Kiruddu Hospital. At the Mulago sickle cell clinic, the average age was 16 years, with 58.5% being female, and 46% having an education level of secondary. At Kiruddu Hospital, the median age was 24, with 71.1% being female, and 48.1% having an education level of secondary. The average cost of transport to and from the hospital was 11,000 Ugx. The average duration of HU use was 24 months. All this is summarized in Table  1 .

Eligibility for HU use

259 participants met the criteria for HU, 202(78.0%) were taking HU, and 57 participants met the criteria for HU use but were not taking HU. Of those that use HU, 92.1% were current users and 7.9% were past users. HU use among eligible patients is shown in Table  2 .

Patient-related barriers to HU use

Painful crisis was the most common indication for HU use reported in 94.6% of participants, followed by chest syndrome (28%), anemia, 19.4%, and avascular necrosis, 24.7%. indication for HU use is summarized in Table  3 above.

Indications for initiating HU use

The study identified three themes as follows: Patient barriers at the individual, facility, and community level as shown in Tables  4 , 5 and 6 , and 7 . Facilitators for the use of HU and recommendations for improvement as displayed in Table  8 .

Individual barriers

Financial constraints.

The most common reason for stopping HU use was lack of affordability reported by 81.2% of participants. This information is summarised in Table  5 below. The major challenge among 19 (48%) participants from qualitative interviews was financial constraints to buy medication, and food and meet the transport costs to access care.

“There are times when I skipped my medicine doses… Sometimes it was due to money; if I didn’t have the money to buy the tablets. Because we are supposed to buy the tablets—sometimes you go to the pharmacy, and they are expensive, yet you don’t have money. You use the little money you must buy some tablets and they get finished, and I have no money to buy more. So, I first miss some days, and a few times I depend on Panadol and Ibuprofen for emergencies. I take it in case I don’t have the medicine not daily—they told me I could take it occasionally if I am constrained financially and unable to buy the medicine”.

-- IDI, 18, female, adult, Mulago.

Most adults and adolescents were not able to pay for prescribed sickle cell drugs and other ailments because they were expensive.

“… There was no money to buy it because a packet is shs.15,000; just one packet… yet buying it is expensive and I have no money. Now I no longer stay with my father; my mother stays home; she does not work. If my father goes to work and takes a long time there, my mother is suffering to buy the medicine. She buys it for shs. 15,000 but it gets finished in a week, so she must look for more shs. 15,000 to buy another dose”. -- IDI, 19, Male, adolescent, Mulago.

Most of the adolescents said they were unemployed and were mainly dependent on their parent’s support, which was sometimes limited:

“If there is transport because I am always at home. Ever since they fired me from my job, I have been at home”. -- IDI, 3 1, female, adolescent, Mulago.

Inadequate knowledge

Inadequate knowledge about HU among adolescents and adults by few participants. Generally, most individual participants from qualitative (27, 68%) and quantitative (231 (88.2%) across all age categories had a high level of awareness about hydroxyurea and its related benefits as shown in Table  5 below. For the few adult participants who lacked awareness about Hydroxyurea, it was because health workers did not inform them about it, and some had never started on it.

Because I didn’t know about it [Hydroxyurea]; they had never told me about it. So, the doctors asked me, “Have you ever used hydroxyurea?” and I told them, “I don’t know about it . -- IDI, 22, male, adult, Mulago.

Among adolescents, there was low knowledge about HU due to limited sensitization as they did not receive enough health education. Moreover, they reported rumors, myths, and misconceptions about sickle cell in the community.

“Most times what scares them, they say, “Once you start taking the drug and then stop you die”, it scares them as well—okay, the rumors are so many”. -- IDI, 11, Male, youth, Mulago.

Some participants said there was a lack of awareness about Hydroxyurea in the community because they were not sensitized and had not come across people who swallowed it:

“Community people have not been well oriented about Hydroxyurea benefits by the doctors… they have not heard anyone on it so far”. -- IDI, 16_ adult, Mulago.

Persistent pain affected the use of HU

Nearly half (38%) of the participants who participated in individual interviews reported persistent pain despite taking painkillers as a major challenge that hindered proper adherence.

They used to administer painkillers to me since I had a lot of pain! And if the pain comes, it is so strong; it is severe because at school there is a health facility they would do their best with the painkillers but they had no effect. So, they would bring me here” . -- IDI, 28, female, youth, Mulago.

Some participants said they could hardly walk to the health facility due to severe pain, hence missed appointments and picking drugs.

I missed my appointment because I was sick and bedridden, admitted to the hospital. Huh! I feel pain. There are times I could hardly walk…. -- IDI, 10, female, adult, Mulago.

Poor adherence to HU

43% (17, 43%), mainly adolescents from qualitative interviews reported Poor treatment adherence. They missed taking sickle cell medication on time or stopped it for a month or more. The major reasons for missing drugs were pain, running out of drugs, missed appointments to pick drug refills, and lack of funds to buy drugs when they ran out:

“So, when I swallow it in the morning, it takes like 30 minutes, then I go back to normal. But sometimes I miss doses because the medicine is finished before the people at home bring for me more, because I am not near home. They bring it within one week because they also must look for the money to buy it. -- IDI, 28, female, adolescent, Mulago.

Another reason for poor adherence to sick cell medication was forgetfulness. Some participants said they came back from school tired and slept off while others could be distracted by television:

“We leave preps at around 9 pm and I must wash my uniform, I must do this or that. So after, you are exhausted and you just fall on the bed; maybe you say, “Let me read this and swallow the medicine, then I sleep” but before you realize it, they are ringing the bell to wake students up. So that is when I have forgotten and then I remember”. --IDI, 28, female, adolescent, Mulago.

One participant said they had poor access to medication when traveling due to the loss of a loved one and suffered too much pain. They also missed appointments due to illness and admission.”

“I had lost someone. Sometimes, I would be ill and have a lot of pain. I felt too much pain. I missed a dose… Still, I have ever missed taking a dose that was because of my illness. I was admitted”. --IDI, 9, male, adult, Mulago.

Some participants missed drugs due to academic reasons. They could not leave school during the exam period to pick treatment refills.

“There is a time I missed some appointments that in turn made me miss drugs…I am in boarding school and my appointment was due during my examination period, so I was unable to come”. -- IDI, 19, Male, adolescent, Mulago).

One caretaker said adolescent was tired of swallowing several tablets daily hence missed taking drugs on some days.

“Talking about being fed up with the medicine; sometimes I say[caregiver], “I will give you shs.500 if you[adolescent] swallow the medicine”. So personally, when I noticed that on the weekend, she swallows 2000 mg, I said, “Okay, let us leave Monday” and we went against the doctor’s instructions. So honestly, we gave Monday a break; we don’t swallow medicine because she swallowed 2 tablets on Sunday and 2 tablets on Saturday, so we rested on Monday. We resume swallowing it on Tuesday till Sunday, then we rest on Monday. But eh! She totally didn’t like it! So, we discussed and came to that agreement, so that is how we do it”. -- IDI, 30, female, caregiver, Mulago.

Missed routine clinic visits or appointments affected adherence.

Most participants [ 11 ] missed routine clinic visits or appointments mainly because they lacked money for transport to the health facility. The cost of transport for some participants was Ugx 20,000.

“I have never missed a clinic appointment and you said yes…I missed because my mother did not have money for transport, yet she had debts—she had to work so that she could pay the debt she had”. --IDI, 21, female, adolescent, Mulago.

Missed appointments hindered participant’s access to medical care and routine sickle cell monitoring.

“Ever since we started this medication, they told us not to miss any appointments because she must come back and monitor her progress ever since she started hydroxyurea. I believe we won’t miss it again. Previously, we could buy our own medicine but this time round, we won’t miss clinic appointments again”. -- IDI, 14, caregiver, female, Mulago.

Transport constraints were the major reasons for missed appointments. Some participants said they lived at far-off distances from health facilities.

“Since sometimes I live far away and sometimes there is no money for the transport fare… Because there are times when I am suffering symptoms of the illness and I have no transport to bring me to the health Centre for instance now, I just borrowed the money to bring me here. So, I fall sick and swallow the medicine, then I feel better”. -- IDI, 31, female, adult, Mulago.

Only one participant reported that a busy work schedule hindered appointment-keeping.

“I miss appointments because sometimes I am weak, or sometimes I might be busy. I am healthy, but the work I am doing keeps me busy. That is what usually happens”. -- IDI, 22, male, adult, Mulago.

Psychosocial, and emotional challenges

Some participants said they lacked a positive outlook on life. They emphasized they lacked motivation, zeal, and interest to continue taking HU drugs because they had lost hope for a complete cure for sickle cell:

“Sometimes, we lack the zeal to come since we do not have the hope to get completely cured but if the doctor tells you to keep coming and follows you up and encourages you” --IDI, 10, female, adult, Mulago.

Some participants (n = 11, 28%) were anxious and worried to take drugs for life without stopping as they worried could cause undesirable side effects:

“For us that have used it, we experience the benefits, but also worry about the risks like kidney, failure because those are the crucial body organs! So, we worry about all that” --. IDI, 30, female, adult, Mulago.

Some participants (38%) from individual interviews suffered stress due to severe pain especially when they missed medication. They felt bad when missed sickle cell drugs because it would result in painful episodes.

“What I know is that it [hydroxyurea] prevents the painful episodes or controls it but now if you don’t swallow it, the pain returns and this time it is severe. That is what I’m scared of”. --IDI, 20, male, youth, Mulago.

Perceived drug-related side effects affected

Some participants [ 10 ] experienced drug-related side effects that affected adherence to HU, such as headache, dizziness, Painful erections at night, frequent urination, and eyes turned yellow.

“I would have headaches every single day without a break. So, there was a health worker we asked while I was admitted, and he said this drug does not cause headaches and we ignored the issue. But it was a severe headache; they first stopped me from taking it for some time… And they [doctors] told her to stop taking it for 2 weeks and that’s what she did”. --IDI, 24, female, adolescent, and caregiver, Mulago.

Some participants were anxious and worried about taking drugs for life without stopping as they worried could cause undesirable side effects:

“For us that have used it, we experience the benefits, but also worry about the risks like kidney, failure because those are the crucial body organs! So, we worry about all that”. --. IDI, 30, female, adult, Mulago.

Facility-related barriers

Long queues.

Long queues that led to poor quality of care were also reported in the hospital. Some participants were concerned about doctors who left without attending to them, yet they were in severe pain.

“ Anha! Sometimes you go and they tell you, “The time is up; the doctor is leaving, the patients’ queue was long”, sometimes you go and there is no medicine”. -- IDI, 5, female, adult, Mulago.

Some participants said there was no counseling support at the health facility regarding sickle cell at the health facility:

“Uh, they [doctors] did not support me when I missed my appointment. When I came, I was registered and given treatment. They did not do anything else or give me any form of counseling”. --IDI, 9, male, adult, Mulago .

Drug stock-outs

Drug stock-outs were mainly reported by adults. lack of sickle cell medication and other drugs in public health facilities leads patients to run out of drugs. They were told to buy the prescribed drugs from other private pharmacies to resolve issues of drug stock-outs, yet they could not afford them.

“About a month. Initially, they would give us three or six sachets of medicine. They can give you medicine for a two months or three months dose. Then, I buy the rest in the pharmacy. The challenge is some pharmacies do not have it in stock”. -- IDI, 10, female, adult, Mulago.

Some participants reported a lack of free medication in public hospitals.

“…Because even if you find someone and say, “Please help me with shs. 30,000 to buy medicine” they tell you, “Go to Mulago, medicine is there free of charge!” But they don’t know the problem is you will get there and fail to get it”. -- IDI, 5, female, adult, Mulago.

Poor communication with health providers

One participant said they did not report drug-related side effects they experienced to healthcare workers due to forgetfulness.

“I forgot to tell the health workers about the side effects I suffered. Sometimes I simply forget all about it and ignore it and say, “As long as it [side effect] is over, I continue swallowing…Now these health workers initiated me into that medicine and told me to swallow it. I would never skip a dose. They told me to swallow it from Monday to Friday, then I take a different dose for the weekend, and then it is the same for the following week”. -- IDI, 19, Male, Youth, Mulago.

Community-based barriers

Some participants reported that rumors, myths, and misconceptions were the major concerns about sickle cell in the community.

“Most times what scares them, they say, “Once you start taking the drug and then stop you die”, it scares them as well—okay, the rumors are so many” -- IDI, 11, Male, youth, Mulago.

Some participants said there was limited access to sickle cell medication in their nearby community health facilities:

“One time my leg was in severe pain; I had not yet seen the doctor. So, if the health facility was nearby—at that time I would go to Nakaseke, and they work on me. But now, there are no health workers who handle sickle cell cases in Namuwogga”. -- IDI, 27, female, adult Mulago.

Family disagreements or conflict arises from lack of financial provision by man for woman to take child to hospital:

“Sometimes we get challenges, and it affects the family. We even get disagreements between the mother and father; sometimes you are supposed to take the child and he says, “I have no money! If you can go, then go. If you are unable to go, you will go some other time” yet the appointment date is due. So, those are some of the challenges we experience” -- IDI, 26, female, caregiver Mulago.

Facilitators for the use of HU

Facilitators reported by participants were mainly at the Individual and facility level as displayed in Table  7 .

Individual level

Positive perception of HU among adolescents and adults facilitated its utilization. Hydroxyurea use was described as effective pain relief, symptom control, and good and helpful treatment among most of the qualitative participants (n = 28, 70%). This was because it mainly relieved and prevented painful sickle cell episodes, stroke, and malaria. One participant said she received pain relief having taken hydroxyurea, she also read via a Google search about weight gain benefits related to hydroxyurea’s use.

“I suffered severe pain before you started taking it [Hydroxyurea]. The pain was severe! It was so strong that sometimes I could faint because the pain was overwhelming…So far, it is not a bad medicine; it has helped us to decrease the pain so that it is not severe”. -- IDI, 3, female, adolescent, Kiruddu.

Patients reported that Hydroxyurea use improves quality of life as it reduces opportunistic infection and frequenting of hospitals by patients.

“The medicine can make you not go to the hospital every day because the day I began taking the medicine, I stopped going to the hospital. I stopped having infections. The medicine can protect you from getting sick in the cold. You can do anything even when you do not put on a sweater. You feel better. Even if you feel pain, it is not so much”- . - IDI, 15, adult male, Mulago.

Some participants illustrated the ability to do daily activities or tasks very well after using hydroxyurea. They said they had the energy to wash, cook, and perform house chores. Hydroxyurea uses enhanced mobility as one participant said could travel on long journeys having taken it.

“Initially, my back would hurt whenever I would walk a distance such as from this place to home which is no longer the case. I am better. I can perform my tasks very well. I wash, cook, and do everything very well”. --IDI, 9, male, adult, Mulago.

Participants said hydroxyurea use regulated the blood levels and reduced the level of the disease in the body or the blood.

“It seems when we had just gotten initiated onto hydroxyurea, the body was not yet used to it, so the blood levels were a bit unstable. Because when we initiated her onto hydroxyurea, they first checked her blood levels and all that. When we had just initiated her, her blood levels went down, and they initiated her back onto the drug around 2018 in December. And ever since that time, we have not had challenges with her blood levels, expect just eating lots of avocado to supplement”. -- IDI, 30, female, caregiver, Mulago.

Patients reported that Hydroxyurea use prevents a child from anemia, stroke, and other complications.

“Those [patients in waiting area] I have heard them say that it has worked for them; those I have heard especially while we are seated. They say it was effective for them; if the child had many pain episodes, they reduced. Or if the blood levels were reduced—even my brother; he used to have anemia and the pain was severe but when he started swallowing it, it started to reduce”. --IDI, 24, female, caregiver, Mulago.

Long duration on HU, enhanced patient confidence. Most of the participants were aware of hydroxyurea because they had experienced taking it for more than a year which enhanced their confidence. Duration on medication among most participants was between one to eleven years, few took it for less than a year.

“I started hydroxyurea this year in January; we came for a check-up after I went to school because I’m in boarding. Now usually when you take hydroxyurea—remember it is daily, every day I must— “ . --IDI, 28, female, adolescent, Mulago.

Facility level

Information shared by healthcare workers about HU enhanced its uptake. Health providers prescribed hydroxyurea and shared information about it through health education and seminars. They taught about the benefits and risks, the importance of hydroxyurea, and the need for patients to alert doctors in case they experienced unusual Side effects.

“…for us, we got to learn about the side effects from the doctors. But while we were at the seminar, they taught us that it is under the supervision of the doctors, who check frequently. But when we gather as women, those who know and those who don’t know, they say, “It burns the liver and the kidneys”, others say, “It is expensive”. But since you have some knowledge about it, you are firm and whatever you notice about it, you inform the doctor, “Doctor, I notice my fingers are turning” and they counsel you. Because even if we are taking it, as parents we are worried”. -- IDI, 30, female, adult, Mulago.

Healthcare workers performed testing to confirm the diagnosis of sickle cell before treatment initiation that enhanced treatment prescription. There was only one participant who said was started on treatment after symptom identification such as joint and leg swelling.

“I was then diagnosed with sickle cells. So, they asked them, “What signs have you noticed?” Then they said that they saw my joints and legs swelling. So, they got to understand and prescribe medication”. -- IDI, 10, female, adult, Mulago.

The availability of HU drugs enhanced its uptake. Some participants said they bought sickle cell medication from private pharmacies or clinics whenever drugs were not available at public health facilities.

“They [doctors from public facility] gave me the prescription and told me to buy it. So, I bought and took it from the private pharmacy, it was finished. So, after a while, I bought more medicine, but they told us we had to swallow it every day”. -- IDI, 5, female, adult, Mulago.

Recommendations from participants on how to alleviate barriers to SCD care

The major recommendation to patients was for patients to receive continuous advice and encouragement from healthcare workers. They particularly desired health workers to remind them about perfectly adhering to Hydroxyurea because it reduced the constant attacks and kept them healthy. They could advise them to set up reminders such as alarms for perfect adherence.

“We need to receive advice from the health workers. Sometimes, we lack the zeal to come since we do not have the hope to get completely cured but if the doctor tells you to keep coming and follows you up and encourages you” --IDI, 10, female, adult, Mulago.

Patients need to be told about the benefits of hydroxyurea, so that they may accept its early initiation and follow the doctor’s instructions.

“In order to accept the drug; we must tell them about the advantages of hydroxyurea. And I think we should also give them examples; I don’t know if you the health workers see that—personally, my child; I know that when she started taking hydroxyurea, her health condition became better. I regretted why they didn’t tell me earlier, but I feared it because I heard them say, “Once she gets initiated onto it, she takes it for life” and I would say, “Argh!” I was quite afraid of it. But I realized that in this life, many people are taking medicine daily and it helps them. [Hmmm] Maybe Musawo, the question I want to ask you today is, if the person grows up and gets to the child-bearing age, does she stop taking hydroxyurea”. -- IDI, 26, female, caretaker, Mulago.

Continuous sensitization about the benefits and risks of hydroxyurea, to create awareness.

“Other people need more teaching about the thing, and telling them, “If the child takes it, it will reduce the number of times you come here due to the child’s severe health condition” -. - IDI, 28, female, Youth, Mulago.

Counseling hydroxyurea should be done as well as counseling patients to value life.

“A way of encouraging people is to educate them about how important their health is; he shouldn’t be discouraged because he is neither the first nor last because there are many people out there who are ill, but everyone must believe in themselves so that they are healthy. So, if my parent cares, I also must care for myself to make sure I am healthy for the sake of my parent, instead of saying, “I don’t want to swallow medicine” one must sacrifice! --IDI, 18, female, adult, Mulago.

A peer-to-peer approach using experienced patients encourages patients to support each other and testify about the benefits of adhering to sickle cell treatment.

“…there is a school with children who suffer from sickle cell who are about 10. So, they asked me for advice, “Should we swallow hydroxyurea?” because I have spent 7 years. And I told them, “You swallow it, I also swallow it” I don’t discourage them because I have grown up without hydroxyurea. But I said the young ones know that it is helpful to them, so I cannot tell them about the fingernails turning black. Because I see their fingernails; they are not as black as I teach them different vocational skills in their school and they ask me, “Do you also swallow this medicine?” and I tell them I swallow it. But I do notice them. -- IDI, 27, female, adult Mulago.

Need financial support to start up a business as a source of income for medication to meet transport, food, and other needs.

“I was thinking, since she has finished Senior 6, maybe I could start up a small business for her so that she earns some money. Even if she gets shs. 2000, she saves it for clinic appointments and buying medicine” --IDI, 24, female, youth, Mulago.

Urge patients to drink plenty of water and mind their diet and clothing.

“They [patients] should be cautious of the cold weather by wearing a scarf. You should take water instead of Soda, minute maid [ soft drink] because that is not recommended. You would rather buy passion fruits and make your juice since the other drinks contain acids that are not good. I would rather drink water instead of drinking those other drinks. [Okay! ] You must wear a sweater when it is cold and desist from drinking cold water in the cold weather. You must mix it with hot water to become warm”. -- IDI, 17, female, Mulago.

Health facility based

Healthcare workers should address the fears and rumors about sick cell disease and treatment.

“You should address their fears and the rumors because personally, that is what made me afraid at first” -- IDI, 4, male, adult, Mulago.

Healthcare workers should advise/encourage patients to adhere to sickle cell medication:

“You must encourage the patient just like you would say, “You have to swallow folic acid because it increases the blood in the body, if you miss, then the blood levels reduce yet these cells need blood”. So even for that medicine, he/she must swallow it—so one must swallow it daily just as one did for folic acid” –. - IDI, 22, male, adult, Mulago.

There should be free drugs availed at the health facilities:

“Another thing is medicine is expensive! So, what will encourage us to come is, we should get free medicine if it is there. But the one we used to take was easy to access; if they bring us that medicine and at least we get it, find it here, then I am certain that we won’t miss any clinic appointment. Because when you come, you expect to go back with medicine, all you must do is invest in the transport”. -- IDI, 14, female, caretaker, Mulago.

Healthcare managers should ensure a consistent and sufficient drug supply.

Doctors should do follow-ups of patients and set up reminder mechanisms to adhere to treatment and keep routine clinic visits.

“Now there is a certain lady, they gave it to her and after it got finished, she stopped there claiming, “I thought you must give it to us. It is expensive in the pharmacies, and I thought I had to get it from here. Why would I buy it?” She was like, “Who is buying the medicine? Me? It is expensive! If you are giving it to us, give it to us consistently”. Other people need more teaching about the thing, and telling them, “If the child takes it, it will reduce the number of times you come here due to the child’s severe health condition” -- IDI, 28, female, Youth, Mulago.

Healthcare facilities should plan to offer transport refunds to sickle cell patients, “Support us by giving us money for the transport fare. Sometimes we are unable to afford it”.

“Apart from the government supplying the medicine; maybe about the transport as well. If they can, they could organize for us some transport when we are bringing them here because these children—sometimes we get challenges, and it affects the family. We even get disagreements between the mother and father; sometimes you are supposed to take the child and he says, “I have no money! If you can go, then go. If you are unable to go, you will go some other time” yet the appointment date is due. So, those are some of the challenges we experience”. -- IDI, 26, female, youth, Mulago.

Health facilities should allow credit options for patients who lack funds to buy drugs.

“What I think—okay, is it possible to give the people the drugs today and they pay for it another time; you record it down. I want them [doctors] to give us patients] the medicine on credit then they pay later”. --IDI, 20, male, youth, Mulago.

Financial empowerment for women to support sickle cell children at the family level should be done. Work opportunities or Income generation activity (IGA) for caregivers or sickle cell patients should be identified.

“So, we [women] must hustle even more than men—sometimes we come and there is no medicine completely! …for our children, we should be assisted in that regard, train us in income generation activities to support our children’’ -.

-- IDI, 30, female, adult, Mulago.

Community-based

Extension of sickle cell health services to the communities and local districts should be done to resolve the issue of transport.

“We need health facilities in every district because sickle cell patients are quite a number. In my village I was the only one and the whole world knew that I had the ‘virus’ as they used to call it. [Hmmm] and it hindered the boy who almost married me; they told him, “Don’t bother! That one is going to die”. But now… we need those health facilities”. -- IDI, 27, female, adult Mulago. “…they could put up health facilities in communities with health workers who handle sickle cells because you leave the place in severe pain—one time my leg was in severe pain; I had not yet seen the doctor. So, if the health facility was nearby—at that time I would go to Nakaseke, and they work on me. But now, there are no health workers who handle sickle cell cases in Namuwogga” -. -IDI, 27, female, adult Mulago.

Sensitization of patients and community people about Hydroxyurea should be done.

“Patients should be intensively sensitized about it [hydroxyurea] so that they can understand it very well. They should sensitize them so that they understand very well how effective it is”. -- IDI, 32, female, adult, Mulago.

Government should reduce the price of sickle cell medicine to enhance access for all patients.

“If it is possible—because most times the drugs are not in stock here, so they should reduce on the price or cost of the medicine…reduce the cost of that medicine. Some people cannot even start taking it; they live far away, from where they get the medicine, yet it is also expensive. So, it would hinder him or her from accessing it”. -- IDI, 11, Male, youth, Mulago.

The government should put up sickle cell health facilities in rural areas:

“Government should supply the medicine to the health facilities in the rural areas. Supply the medicine for sickle cell disease because even in the government health facilities; if you want medicine, they tell you it is out of stock because I have ever gone there when my drugs were over”. -- IDI, 13, female, youth, Mulago.

The government could support patients by providing more drugs in the health facility or in our clinic here:

“Government should supply the medicine to the health facilities in the rural areas. Supply the medicine for sickle cell disease because even in the government health facilities; if you want medicine, they tell you it is out of stock because I have ever gone there when my drugs were over” -- IDI, 13, female, youth, Mulago.

There is a need for a collaborative partnership with international or non-governmental organizations to support sickle cell patients:

Now, the government; because I have ever been NTV, talking about this issue. Just like they support our friends with HIV, they should also find international organizations to support us as well. Because HIV is serious, these patients are difficult! At least they could get for us only the capsules. -- IDI, 24, female, youth, Mulago.

The overall prevalence of HU use among participants who qualify for its use was high at 78%. This is the first study in Uganda to document the prevalence of HU use among patients with SCD. A literature search didn’t yield any studies documenting the prevalence of HU use among eligible patients. A Nigerian study that assessed Hydroxyurea utilization as a lesson in Public Health found that 65% of patients assessed were eligible for HU use and zero were using it, 5% of patients had been informed of or were aware of hydroxyurea as a treatment option for sickle cell disease [ 12 ]. In our study, though 88.2% of patients knew HU as treatment for SCD.

The high prevalence use of HU found in our study is unlike what other studies found in Africa, this is not uncommon given the high prevalence of SCD in these regions of the world. The high prevalence of use is explained by policies that encourage treatment of SCD e.g., HU is listed on the essential medicine list informed by the high prevalence of SCD hence it is procured and made available up to national referral hospitals. Patients are reviewed by healthcare workers in national referral hospitals who are experts in their field, and such are up to date with the latest management protocols for SCD, this is a key driver in the high prescription rate of HU.

In this study, patient-related barriers to HU use included financial constraints, poor adherence to sickle cell medication, missed routine clinic visits or appointments, psychosocial and emotional challenges, poor communication with health providers, and drug-related side effects (headaches, dizziness, frequent urination and yellowing of eyes).

To the best of our knowledge, this is the first study to document patient-related barriers to HU use among patients with SCD in Uganda. These barriers are like those reported by a cross-sectional survey done in Nigeria. Among patients and caregivers, barriers included lack of knowledge; perceived side effects; cost; religious beliefs of disease causation; and lack of pediatric formulation [ 13 ]. Another study done in Chicago, USA, looked at barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease, they found participants reported negative beliefs/motivational barriers (32%), recall barriers/forgetfulness (44%), and access barriers/paying for hydroxyurea and/or getting refills on time (32%) [ 14 ]. Another study looked at barriers to the use of hydroxyurea in the management of sickle cell disease in Nigeria, reported side effects profiles as the commonest barrier, reported concern for infertility (52.0%), and safety profile of HU in pregnancy and lactation (48.2%) [ 15 ]. A U.S. regional collaborative report on barriers to hydroxyurea use from the perspectives of providers, individuals with sickle cell disease, and families found providers and patient/caregiver reports about hydroxyurea use were inconsistent with one another; adults 26 years and older were least likely to be on hydroxyurea; and the likelihood of being on hydroxyurea decreased with one or more barriers, they also found that, even for patients on hydroxyurea, challenges to taking the medicine at the right time and forgetting were crucial unintentional barriers to adherence. Intentional barriers such as worry about side effects and “tried and it did not work” were important barriers for young adults and adults [ 16 ].

These barriers are not uncommon or unique since SCD is a chronic disease that requires daily medication. Similar challenges are experienced by other patients with chronic conditions [ 17 ]. Patients are bound to get treatment fatigued leading to poor adherence and missed appointments, get depressed, and sometimes suicidal. SCD is prevalent in the black population most of whom are residing in resource-limited settings like sub-Saharan Africa where finances are a major factor in accessing health care. Even in the US, SCD is prevalent among the black population [ 14 ] and most of these populations experience socioeconomic inequalities in developed countries.

These challenges are correlated in that financial constraints coupled with treatment fatigue led to poor adherence to treatment missed appointments, and psychosocial and emotional intrigue.

Other barriers reported were categorized as facility and these included drug stockouts, poor quality of care (referred as few health personnel to attend to them, and lack of counseling services). Community barriers included knowledge gaps and poor access to sickle cell medication in nearby health centers.

These barriers have been reported by other studies, in Nigeria, among clinicians, barriers included limited knowledge of the drug, as well as low self-efficacy to prescribe among physicians and to counsel among nurses; perceived side effects; perceived patient preference for traditional medicine; cost for patient and expense of accompanying laboratory monitoring; and limited availability of the drug and equipment for laboratory monitoring [ 18 ]. Another study in Nigeria reported barriers to hydroxyurea utilization identified by practitioners included safety and toxicity profile (100%), patient compliance (100%), effective follow-up (100%), drug availability (100%), affordability (100%) and specifically concern for reactivation of latent tuberculosis (50%) and carcinogenesis (100%) and teratogenicity (100%) [ 12 ].

In Africa, drug stockouts are a commonality, it is especially more pronounced if the medicine is used for chronic care like HU for SCD as opposed to an acute illness. Government programs support access to life-saving medications for human immunodeficiency virus (HIV), Tuberculosis (TB), and malaria; however, this is not the case for SCD. Advocacy efforts to sustain the continued availability of HU in the SCD treatment program are necessary.

Suggested recommendations by participants included; continuous advice and encouragement from health care workers, continuous sensitization about the benefits and risks of hydroxyurea to create awareness, peer to peer approach using experienced patients to support each other, the need for financial support to start up a business as a source of income for medication to meet transport, food, and other needs, self-motivation and self-love is needed among patients and urge patients to drink plenty of water and mind their diet and clothing.

These recommendations have been suggested by other studies i.e., prospective evaluation of patient’s perceptions of SCD and hydroxyurea in relation to adherence, HRQOL domains, and clinical outcomes is warranted [ 11 ].

Training of sickle cell care providers to attain and maintain competence in the use of hydroxyurea for the treatment of SCD was recommended by the researchers of the study on the level of utilization and provider-related barriers to hydroxyurea use in the treatment of SCD in Jos, Nigeria [ 19 ]. Researchers from an Irish study on the Irish SCD population reported that the smartphone app was expressed by the majority, with daily medication reminders being the most popular feature [ 11 ].

The suggested recommendations by participants are like interventions already in play in other public health programs such as comprehensive HIV treatment and care programs [ 20 ]. Such programs include social economic empowerment activities that equip them with skills for independent income generating for the sustenance of basic care. This allows patients to afford complementary medication, and nutrition and facilitates adherence to clinic appointments [ 21 ]. Such can be adapted into the SCD management program to offset challenges related to finances. With financial empowerment, all the other correlated challenges will be lessened.

Patients recognize the importance of medical information in advancing compliance with treatment. Programs geared towards increasing healthcare knowledge on novel SCD treatments like HU should be promoted. This will trickle down to more quality medication counseling provided to patients which will then lead to medication compliance. Expert patients could be trained to be peer influencers, by equipping them with information, educational, and communication material necessary to empower fellow patients psychosocially. This strategy has been successfully implemented in other public health challenges e.g., HIV and TB [ 22 ].

Other recommendations were health facility-based and these included; Healthcare workers should advise and encourage patients to adhere to sickle cell medication, There should be free drugs availed at the health facilities, Health managers should ensure consistent and sufficient drug supply, Health care workers should create awareness to patients about benefits of sickle cell treatment, Health care workers should offer continuous advice, health education to patients, Health care facilitates should plan to offer transport refund to sickle cell patients, Health facilities should allow credit options for patients who lack funds to buy drugs.

Community-based recommendations included the extension of sickle cell health services to the communities and local districts should be done to resolve the issue of transport, and Sensitization of patients and community people about Hydroxyurea.

Task shifting in terms of personnel and medication is necessary for grassroots accessibility. Such models have been implemented to improve life-saving therapy like ART for HIV-infected patients and disseminated drug delivery models [ 23 ].

National-based recommendations included the government reducing the price of sickle cell medicine to enhance access for all patients, the Government putting up sickle cell health facilities in rural areas, and there is need for a collaborative partnership with international or non-governmental organizations to support sickle cell patients.

Study limitations

This study was carried out at national referral hospitals which have a better supply of medicines and health care experts in the management of SCD, this created selective bias because the quality of care is not generalizable to other health centers in the country. Future research directions should include national surveys to understand the magnitude of the barriers to better government planning in the allocation of resources.

Because of the Cross-sectional nature, of the quantitative section, we were not able to determine causation but could only determine the association between HU use and patient-related barriers to HU use.

Study strengths

The study was conducted at two national referral hospitals that are in the central region of Uganda. This region has one of the highest prevalence of SCD The central region of Uganda is metropolitan with individuals coming in from different parts of Uganda so the SCD population may be representative. The findings of this study are therefore representative of the sickle cell population in Kampala which is the capital city of Uganda.

This is a mixed-method study, so the qualitative aspects of the study helped to explain the results of the quantitative findings. For example, in this study, we now know that lack of affordability is the reason why most patients have never been on HU even if it is indicated or stop using it when they need it.

Implementing the use of HU has been challenging in Uganda and needs improvement. Facilitators to hydroxyurea use have been highlighted, though Patient-identified barriers at individual, facility, and community levels that need to be resolved. The experiences and insights shared by our participants provide invaluable guidance for increasing the uptake of HU. Further studies are needed to establish validated instruments to assess patients’ pain communication and adherence to the HU regimen. The prevalence of HU use among eligible patients is high at 78%.

Data availability

The datasets used and/or analyzed during the current study are available at https://github.com/PNamaganda/Sickle-cell-Data-in-Uganda. Deidentified data and analyzed data for this manuscript are available from the corresponding author upon request.

Modell B, Darlison M. Global epidemiology of hemoglobin disorders and derived service indicators. Bull World Health Organ. 2008;86:480–7.

Article   PubMed   PubMed Central   Google Scholar  

Lanzkron S, Carroll CP, Haywood C Jr. Mortality rates and age at death from sickle cell disease: U.S., 1979–2005. Public Health Rep. 2013;128(2):110–6.

Lanzkron S, Strouse JJ, Wilson R, Beach MC, Haywood C, Park H, Segal JB. Systematic review: Hydroxyurea for the treatment of adults with sickle cell disease. Ann Intern Med. 2008;148(12):939–55.

Opoka RO, Ndugwa CM, Latham TS, Lane A, Hume HA, Kasirye P, et al. Novel use of Hydroxyurea in an African Region with Malaria (NOHARM): a trial for children with sickle cell anemia. Blood. 2017;130:2585–93.

Article   CAS   PubMed   Google Scholar  

Tshilolo L, Tomlinson G, Williams TN, Santos B, Olupot-Olupot P, Lane A et al. Hydroxyurea for children with sickle cell anemia in sub-saharan Africa. N Engl J Med. 2019; 380:121 – 31.6.

Olupot-Olupot P, Wabwire H, Ndila C, Adong R, Ochen L, Amorut D, ... & Williams, TN. Characterizing demographics, knowledge, practices, and clinical care among patients attending sickle cell disease clinics in Eastern Uganda. Wellcome Open Res. 2020. https://www.health.go.ug/2019/12/02/use-of-hydroxyurea-approved-for-sickle-cell-patients/ .

Brandow AM, Panepinto JA. Hydroxyurea use in sickle cell disease: the battle with low prescription rates, poor patient compliance and fears of toxicities. Expert Rev Hematol. 2010;3(3):255–60. https://doi.org/10.1586/ehm.10.22 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Robinson JH, Callister LC, Berry JA, Dearing KA. Patient-centered care and adherence: definitions and applications to improve outcomes. J Am Acad Nurse Pract. 2008;20(12):600–7.

Article   PubMed   Google Scholar  

Kang HA, Barner JC, Lawson KA, Rascati K, Mignacca RC. Impact of adherence to hydroxyurea on health outcomes among patients with sickle cell disease. Am J Hematol. 2023;98(1):90–101.

10, Jose J, Elsadek RA, Jimmy B, George P, Hydroxyurea. Pattern of Use, Patient Adherence, and Safety Profile in patients with Sickle Cell Disease in Oman. Oman Med J. 2019;34(4):327–35. https://doi.org/10.5001/omj.2019.64 . PMID: 31360322; PMCID: PMC6642718.

Article   Google Scholar  

Fogarty H, Gaul A, Syed S, et al. Adherence to hydroxyurea, health-related quality of life domains, and attitudes towards a smartphone app among Irish adolescents and young adults with sickle cell disease. Ir J Med Sci. 2022;191:809–16. https://doi.org/10.1007/s11845-021-02588-1) .

Aliyu ZY, Babadoko A, Mamman A. Hydroxyurea utilization in Nigeria, a Lesson in Public Health. Blood. 2007;110(11):80.

Okocha EC, Gyamfi J, Ryan N, Babalola O, Etuk EA, Chianumba R, Nwegbu M, Isa H, Madu AJ, Adegoke S, Nnebe-Agumandu U, Brown B, Peprah E, Nnodu OE. Barriers to therapeutic use of Hydroxyurea for Sickle Cell Disease in Nigeria: a cross-sectional survey. Front Genet. 2022;12:765958. https://doi.org/10.3389/fgene.2021.765958 . PMID: 35126450; PMCID: PMC8807646).

Badawy SM, Thompson AA, Penedo FJ, Lai JS, Rychlik K, Liem RI. Barriers to hydroxyurea adherence and health-related quality of life in adolescents and young adults with sickle cell disease. Eur J Hematol. 2017;98(6):608–14.

Article   CAS   Google Scholar  

Adeyemo TA, Diaku-Akinwunmi IN, Ojewunmi OO, Bolarinwa AB, Adekile AD. Barriers to the use of hydroxyurea in the management of sickle cell disease in Nigeria. Hemoglobin. 2019;43(3):188–92. Epub 2019 Aug 29. PMID: 31462098).

Treadwell MJ, Du L, Bhasin N, Marsh AM, Wun T, Bender MA, Nugent D. Barriers to hydroxyurea use from the perspectives of providers, individuals with sickle cell disease, and families: report from a US regional collaborative. Front Genet. 2022;13:921432.

Foo KM, Sundram M, Legido-Quigley H. Facilitators, and barriers of managing patients with multiple chronic conditions in the community: a qualitative study. BMC Public Health. 2020;20:273. https://doi.org/10.1186/s12889-020-8375-8) .

Adimora I, Akingbola TS, Lansigan F, van Hoff J. Pharmacotherapy interventions and barriers to treatment of Sickle Cell Disease in Ibadan, Nigeria. Blood. 2018;132:3523.

Ofakunrin AOD, Adekola K, Okpe ES, Oguche S, Afolaranmi T, Kanhu P, Sagay AS. Level of utilization and provider-related barriers to hydroxyurea use in the treatment of sickle cell disease in Jos. Nigeria Blood. 2019;134:1029.

Ford N, Ball A, Baggaley R, Vitoria M, Low-Beer D, Penazzato M, Hirnschall G. The WHO public health approach to HIV treatment and care: looking back and looking ahead. Lancet Infect Dis. 2018;18(3):e76–86.

Kennedy CE, Fonner VA, O’Reilly KR, Sweat MD. A systematic review of income generation interventions, including microfinance and vocational skills training, for HIV prevention. AIDS Care. 2014;26(6):659–73. Epub 2013 Oct 9. PMID: 24107189; PMCID: PMC3943565.

Medley A, Kennedy C, O’Reilly K, Sweat M. Effectiveness of peer education interventions for HIV prevention in developing countries: a systematic review and meta-analysis. AIDS Educ Prev. 2009;21(3):181–206. https://doi.org/10.1521/aeap.2009.21.3.181 . PMID: 19519235; PMCID: PMC3927325.

Fulton BD, Scheffler RM, Sparkes SP, et al. Health workforce skill mix and task shifting in low-income countries: a review of recent evidence. Hum Resource Health. 2011;9:1. https://doi.org/10.1186/1478-4491-9-1 .

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Acknowledgements

We acknowledge the patients of Mulago Hospital SCD clinic and Kiruddu Hospital who gave us consent to obtain this information.

This study was funded with funds from Novartis Pharmaceuticals. The funding project had no role in the design of the study and collection, analysis, and interpretation of data and no role in writing the manuscript.

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PN– conception, design of work, acquisition, analysis, interpretation of data, drafted and substantively revised the manuscript, PN– data collection, data entry, data cleaning KM – Quantitative data analysis. AT– Qualitative data analysis, CS- design of work, acquisition, analysis, interpretation of data, drafted and substantively revised the manuscript. All authors read and approved the final manuscript.

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Correspondence to Priscilla Namaganda .

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Written informed consent/ assent was obtained from all participants or their parent/guardian or legally authorized representative to participate in the study. Ethical approval was obtained from the Infectious Disease Institute Research Ethic Committee, IDIREC REF 037/2021. All methods and procedures were carried out in accordance with relevant guidelines and regulations.

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Namaganda, P., Nantume, P., Mubiru, K.R. et al. Understanding patient-related barriers to hydroxyurea use among adolescent and adult patients with sickle cell disease in Mulago and Kiruddu hospitals, Uganda, a qualitative study. BMC Health Serv Res 24 , 666 (2024). https://doi.org/10.1186/s12913-024-11125-6

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Received : 24 November 2023

Accepted : 20 May 2024

Published : 27 May 2024

DOI : https://doi.org/10.1186/s12913-024-11125-6

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Translational medicine 101: The future of personalized care

• Published on June 7, 2024
• By  Diana Nichols

In an era marked by rapid advancements in healthcare , translational medicine emerges as a critical field, acting as the bridge between groundbreaking genetic research and practical clinical applications. This new discipline is pivotal, ensuring that scientific discoveries are not just published in journals but are swiftly and effectively transformed into treatments that improve patient outcomes.

What is translational medicine?

Translational medicine is the process by which biologists, clinicians, and technologists collaborate to expedite the journey of scientific discoveries from the “bench” to the “bedside.” This involves refining, developing, and applying new technologies , treatments, and diagnostics to solve pressing clinical needs. It’s about making the connection between molecular insights and medical practice as seamless and as quick as possible.

The role of data management systems

“Translational medicine requires sophisticated data management systems that act less like a map and more like a compass,” explains Dr. Augustine Annan , PhD, a Senior Data Scientist at IMO Health.

His analogy underscores the navigational challenges faced by healthcare professionals who must steer through vast amounts of complex biological data to find clinical applications. These systems are not just repositories of information but are active tools for guiding research towards practical application.

Impact of translational medicine on patient care

One of the most visible impacts of translational medicine is its transformation of electronic health records (EHRs) . By integrating comprehensive, personalized treatment plans into EHRs, translational medicine ensures that clinicians have instant access to the tailored information they need to treat their patients effectively.

Annan highlights this effect: “The impact on EHR systems is transformative, embedding advanced personalized plans that directly influence patient care.”

The core of translational medicine is its ability to tailor treatments based on individual genetic profiles. This personalization is particularly important in the treatment of diseases like cancer, where genetic variations can significantly influence how well a treatment works. For instance, translational researchers use genetic insights to develop targeted therapies that specifically attack cancer cells without harming healthy tissue, significantly improving patient outcomes.

Challenges and solutions

Despite its benefits, translational medicine faces several challenges. The path from discovery to treatment is fraught with technical, regulatory, and ethical obstacles. For every successful therapy, countless others never make it through the necessary trials due to these complexities.

However, innovations in machine learning and artificial intelligence (AI) are beginning to pave the way for more streamlined processes. AI algorithms can predict how new drugs will perform based on vast datasets of clinical trial results, speeding up the development phase and reducing the likelihood of failures.

Case studies in success

Numerous case studies exemplify the success of translational medicine. For example, the development of mRNA vaccines for COVID-19 is a recent, prominent example of translational medicine in action. Researchers were able to design, test, and begin distributing these vaccines in under a year, thanks to decades of prior research into mRNA vaccine technology, showcasing the rapid capabilities of translational approaches.

The future of healthcare

Looking ahead, the implications of translational medicine for the future of healthcare are vast. As technologies evolve, the pace at which new treatments can be developed and approved is expected to increase dramatically. This will not only enhance the ability to treat and cure disease but also significantly reduce the costs associated with long-term healthcare.

Translational medicine stands at the forefront of modern healthcare, a beacon of hope for countless patients and a testament to the power of integrating research, technology, and clinical practice. For healthcare professionals, staying engaged with developments in this field is more than a requirement—it is a responsibility to the future of patient care.

As Annan succinctly puts it, “Embracing translational medicine is essential for driving the innovations that will shape the future of healthcare.”

Want to read more 101 guides? Master the basics of everything from HCPCS codes to NLP and more by clicking here .  

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