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Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV

Abstract

Health systems have improved their abilities to identify, diagnose, treat and, increasingly, achieve viral suppression among people living with HIV (PLHIV). Despite these advances, a higher burden of multimorbidity and poorer health-related quality of life are reported by many PLHIV in comparison to people without HIV. Stigma and discrimination further exacerbate these poor outcomes. A global multidisciplinary group of HIV experts developed a consensus statement identifying key issues that health systems must address in order to move beyond the HIV field’s longtime emphasis on viral suppression to instead deliver integrated, person-centered healthcare for PLHIV throughout their lives.

Introduction

Following the introduction of highly effective antiretroviral therapy (ART) in 1996, the global scale-up of ART resulted in substantial declines in AIDS-related morbidity and mortality. By the end of 2019, 67% of the world’s estimated 38 million people living with HIV (PLHIV) had initiated ART, with 59% achieving viral suppression1. The life expectancy for PLHIV who are diagnosed early and are able to take continuous ART now approaches that of the general population2. Yet, despite viral suppression, PLHIV often report poor well-being and health-related quality of life (HRQoL)3,4,5,6,7.

Factors negatively affecting the HRQoL of PLHIV include multimorbidity, drug and alcohol dependence, poverty, social isolation, difficulties disclosing HIV status, and persecution due to discriminatory laws and attitudes7,8,9,10,11,12,13,14. HIV-related stigma and discrimination negatively affect the HRQoL of PLHIV through multiple pathways, including social rejection, low self-esteem, and barriers to accessing health and support services15,16,17. These problems call for a broad health system response to the health-related needs of PLHIV. This includes the provision of integrated services for the prevention and management of communicable and non-communicable diseases, along with psychosocial and other support to address common psychological, social, and access challenges. Approaching the healthcare of PLHIV holistically, with decision-making driven by the person’s priorities rather than by a pathogen-specific paradigm, has the potential to yield better overall health outcomes18. Comprehensive, multidisciplinary healthcare for PLHIV requires an integrated, person-centered approach. This is likely to enhance HRQoL and contribute to improvements in population-level health across all domains, including infectious and noncommunicable diseases, mental health, and sexual and reproductive health.

Achieving consistent, long-term virological suppression has become a key marker of successful HIV care19,20. Whilst access to effective ART for all remains essential, it should be seen as one aspect of a more multifaceted definition of success. The central goal should be integrated, person-centered healthcare that promotes the importance of HRQoL, recognizing the right of all people to enjoy “the highest attainable standard of physical and mental health”21. The World Health Organization (WHO) Global health sector strategy on HIV 2016–2021 briefly addresses the non-HIV-specific chronic care needs of PLHIV although without mention of HRQoL22. UNAIDS has included a general health target for PLHIV in its strategic guidance for the first time in 2021. It calls for 90% of PLHIV to “have access to integrated or linked services for HIV treatment and cardiovascular diseases, cervical cancer, mental health, diabetes diagnosis and treatment, education on healthy lifestyle counseling, smoking cessation advice and physical exercise”23. Recently, national and regional initiatives have promoted a more person-centered HIV care agenda24,25. This reflects the global movement towards person-centered care for illness in general. A body of evidence, including studies of PLHIV, exists to underpin the concept and practice, which is largely, but not exclusively, from high-income coutries26. Person-centered healthcare must value the social networks of patients, promote quality of life, and reform structurally to improve patients’ experience interacting with the healthcare system, including respect for and protection of human rights. However, there is not yet a common understanding of what the core values and practices of person-centered, holistic care for PLHIV should encompass, or how aspects of this issue may be context-specific.

As a first step in achieving a common understanding, a multidisciplinary expert panel was convened to engage in a Delphi process to develop a consensus statement on the role of health systems in advancing the long-term well-being of PLHIV from a patient-centered perspective. The overarching purpose of the consensus statement is to guide global, regional, national, and subnational stakeholders in improving health system responses to achieve the best possible long-term health outcomes for PLHIV, including HRQoL outcomes. This article reports on the consensus development process and the agreed-upon consensus points.

Methodology

We employed a standard six-stage Delphi process27,28, including the definition of the problem and identification of experts (Stages 1 and 2, concurrently), three survey rounds (Stages 3–5), and actions based on the findings (i.e., endorsement of consensus statements and recommendations; Stage 6)29. (Further details of the methodology for this Delphi study are presented in the Supplementary Information.) The research team (J.V.L., K.S.) established an expert panel comprised of 44 individuals with expertise in the long-term health needs of PLHIV. The expert panel encompassed diverse disciplinary and geographical perspectives, as well as wide-ranging lived experiences (Table 1, Table 2). Eleven expert panel members, including two people living openly with HIV, served as members of a steering committee that was tasked with providing conceptual guidance for this project (J.A., R.B.L.*, G.B., G.C., N.D.*, M.J.F., R.H., A.K.*, J.V.L.*, C.S., K.S.) (project co-chairs denoted by *). Three teams of steering committee members led scoping reviews of the literature on multimorbidity (G.B., A.K.), HRQoL (M.J.F., R.H.), and stigma and discrimination (J.A., G.C.) in order to identify priority issues to consider for the consensus statement. Specifically, the main findings from the respective reviews guided decision-making regarding potential consensus points. In particular, issues thought to be difficult to address or inadequately addressed (e.g., measurement of health-related quality of life, approaches to addressing stigma) were deemed important by the steering committee and expert panel members alike to include in the consensus process.

Table 1 Expert panel members.
Table 2 Expert panel demographic composition and level of engagement.

The research team drew on health system-related issues identified in the scoping reviews to develop an initial set of 29 proposed consensus points with input from steering committee members. Expert panel members were then asked to indicate agreement or disagreement with consensus points in three survey rounds using the Delphi methodology, with further input collected via qualitative comments on each draft point. In addition, their views were sought on selected topics at an online meeting between the second and third survey rounds.

Results

Overall, agreement consistently increased for the consensus points across survey rounds, which is likely indicative of the incorporation of modifications based on the open-ended comments into the final two rounds. In the third survey round, expert panel members reported unanimous agreement with 22 of the 31 items, and greater than 90% agreement with the remaining nine items (Table 3). In only three of the final 31 points did we observe a somewhat different pattern: point 2.4 had a slight shift from ‘Agree’ to ‘Somewhat agree’; point 4.1 had slight shifts from ‘Agree’ and ‘Disagree’ to ‘Somewhat agree’; and point 1.3 had a slight shift from ‘Agree’ to ‘Disagree.’ For these three points, however, the aggregate ratings were still strongly in agreement. (See the Supplementary Information for an explanation of the consensus grading rubric employed.)

Table 3 Consensus points on the role of health systems in advancing the long-term well-being of people living with HIV (PLHIV).

Key terms used in the consensus statement are described in Box 1. HIV organizations globally were invited to endorse the final consensus statement (Box 2).

Summary of evidence

Multimorbidity

PLHIV worldwide have a greater burden of multimorbidity than people without HIV and this burden increases with age3,30,31,32. Common comorbidities include hepatitis B, hepatitis C, tuberculosis, and aging-associated noncommunicable diseases such as cardiovascular disease, chronic kidney disease, osteoporosis, and cervical, anal, and other cancers33,34,35,36,37. Even with access to effective ART, PLHIV are more likely than people without HIV to experience depression and other mental health disorders, including substance use disorders16. Irrespective of whether these conditions precede the HIV infection, which may affect prevention and treatment, multimorbidity in PLHIV is associated with higher levels of hospitalization38, higher healthcare costs39, higher levels of polypharmacy40, and lower HRQoL7,13.

Factors contributing to the higher multimorbidity burden in PLHIV include late diagnosis of HIV, ART toxicities, and long-term effects of HIV on the immune system41,42. Even among PLHIV who achieve long-term viral suppression, chronic immune activation may contribute to the onset of aging-related comorbidities43,44. Determinants of health, including social determinants such as poverty, stigma, and discrimination, as well as environmental factors such as criminalization and incarceration put some PLHIV at increased risk of developing comorbidities and having poorer comorbidity outcomes13,45,46,47. Health-related behaviors such as smoking and dependent drug or alcohol use further add to the multimorbidity burden48. Difficulty in disclosing a positive HIV status, as well as experiences of stigma and discrimination deeply affect the mental health of PLHIV and introduce barriers to engagement in care, hence increasing the risk of poor health outcomes15,49.

Disease-specific approaches to the provision of health services for PLHIV are likely to be inefficient, particularly because it is common for multiple comorbidities to share the same risk factors, resulting in syndemics50. Integrated healthcare models tailored to reflect the multimorbidity-related needs of PLHIV in different geographical settings have the potential to deliver better health outcomes, if implemented equitably51, and can do so cost-effectively52. By addressing the prevention, screening, and management of comorbidities in a person-centered manner, guided by the needs of individual patients, health systems can also respond flexibly to the multidimensional process of aging with HIV, taking into account both chronic and episodic health-related needs53. The priorities of PLHIV may differ from those of service providers. For example, PLHIV may be more concerned than providers about issues such as pain and sleep disturbance54. Addressing concerns identified by PLHIV will be important for effective treatment and symptom management.

A new paradigm is needed for addressing multimorbidity in PLHIV. The conceptualization of frailty in geriatric healthcare suggests a framework for identifying PLHIV who are at higher risk of poor health outcomes55. WHO’s conceptualization of healthy aging as a process that is influenced by both intrinsic capacity and the environment may also provide insights, along with the related concept of functional ability, which emphasizes people’s ability to do what is important to them at different stages of their lives55,56. Further research is needed to determine how these approaches can inform the clinical care of PLHIV.

Health-related quality of life

Health is defined by WHO as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”57, while international law recognizes the human right of all persons to “enjoyment of the highest attainable standard of physical and mental health” and requires States to take measures to progressively realize this right over time58. HRQoL is increasingly acknowledged as an important aspect of health. It is commonly assessed by patient-reported outcome measures (PROMs), which reflect people’s subjective perceptions of their health-related experiences59. Validated PROMs can be used to systematically quantify people’s HRQoL, allowing for observations about how HRQoL varies among individuals, across groups, and over time. The comprehensive multidimensional nature of PROMs that measure HRQoL makes them a useful tool for determining how well people are responding to the challenges associated with complex chronic health conditions. Incorporating HRQoL monitoring into clinical and community services for PLHIV can provide a person-centered perspective on the effectiveness of interventions, inform health-related decision-making, and identify PLHIV who would benefit from clinical and community services to address modifiable factors that negatively affect HRQoL.

The relevance of HRQoL as a measure of well-being among PLHIV is well-established. PLHIV have reported poorer HRQoL when compared to members of the general population, and also poorer HRQoL than people with other chronic health conditions3,4,5. Poorer HRQoL scores are closely correlated with worse clinical health measures such as low CD4 T-cell count and the occurrence of AIDS-defining events60,61,62,63. While comorbidities, disability, and pain impair HRQoL7,64,65,66, successful HIV treatment has a positive impact67,68. Physical and mental dimensions of HRQoL scores predict viral rebound and all-cause hospitalization69. Better scores on the physical dimension of HRQoL predict survival among PLHIV receiving ART, as well as emergency department utilization and hospital discharge rates70,71. Enhancing HRQoL has the potential to improve clinical outcomes, adherence, and retention in care7,60.

PLHIV report a number of components of HRQoL that are important to them. These include physical (e.g., pain and gastrointestinal issues), cognitive (e.g., memory and sleep), psychological (e.g., anxiety and depression), social (e.g., isolation and intimacy), functional (e.g., independence and ability to perform everyday activities), welfare (e.g., finances and fears regarding immigration status), spiritual well-being (e.g., achieving a sense of peace), and information (e.g., about long-term outcomes about their condition) components72,73,74. However, issues that are important to PLHIV, especially non-physical issues, maybe missed by those providing routine clinical care due to existing service delivery structures and a lack of training about and awareness of these issues75. A healthcare approach that focuses solely or primarily on laboratory results may lead PLHIV to feel that the physical and psychosocial concerns that matter to them are not equally important to their healthcare providers76. Therefore, validated PROMs used to measure HRQoL should reflect the symptoms and concerns reported by PLHIV and should be culturally appropriate, including for marginalized groups. Several internationally validated instruments, generic and HIV-specific, are currently used to measure HRQoL in PLHIV for general population comparisons, medico-economic assessments, and specific research and clinical purposes (e.g., SF-12v2, MOS-HIV, PROQOL-HIV, WHOQOL-bref)59. As both internalized and enacted stigma negatively impact HRQoL77,78, some validated instruments, such as PROQOL-HIV79, have included a sub-scale measuring stigma as a component of HRQoL.

Potential benefits of using PROMs in routine HIV care have been readily identified by PLHIV and their service providers: achieving a person-centered approach, empowering individuals to raise concerns, feeling that all concerns are heard and taken seriously, facilitating discussion of sensitive problems, increasing engagement with services and treatment adherence, and identifying who is benefiting or not benefiting from care and support strategies47.

HIV-related stigma and discrimination

PLHIV may experience multiple forms of stigma and discrimination at various levels (e.g., policy and law, health system, and interpersonal) and in different settings (e.g., health sector, education, workplace, the justice system, families and communities, and emergency and humanitarian settings)80. Such experiences have direct social and health consequences (e.g., depression, anxiety, substance use, impaired quality of life, social exclusion, internalized stigma)16. They also adversely affect decisions regarding prevention behaviors, engagement in care, and uptake of social services81,82,83,84.

Discriminatory laws that criminalize or otherwise punish key populations, or that prohibit or impede the delivery of specific health services (e.g., affordable medications, harm reduction services, drug dependence treatment, and sexual and reproductive healthcare), or that fail to respect and protect human rights such as privacy or autonomy in medical decisionmaking, constitute major barriers to the successful implementation of models for comprehensive care for PLHIV85. Legal and policy frameworks also can harm the material well-being of PLHIV when social security programs do not adequately support those experiencing disability related to HIV or comorbidities, or when HIV or comorbidity services are not reimbursed, resulting in catastrophic health expenditure86.

These examples underscore the role of HIV-related stigma as a major driver of health inequities87. The stigma associated with real or perceived HIV status, including within healthcare settings, also intersects with other forms of stigma and discrimination related to social identities or characteristics, e.g., race, ethnicity, sexual orientation, gender identity, age, disability, poverty, migrant status, sex work, drug use, and prior or current incarceration15,88. This intersectional stigma can adversely affect physical and mental health outcomes15. Layered stigma intensifies the intertwined stigma-discrimination-care relationship, which may lead to delayed, sub-optimal, or avoided care81,82. The overload caused by suffering intersectional stigmas has adverse effects on both mental health and health behaviors. This means that the health, economic, and social needs of PLHIV suffering structural inequality must be viewed through the prism of intersectionality if there is to be a reduction in the cognitive, social, physical, and moral distancing these groups experience from that of other people89.

Examples of stigma and discrimination reported by PLHIV in healthcare settings include excessive infection control precautions taken by providers, longer waiting times, disrespect, negligence, reduced confidentiality, delay or denial of treatment, and poor support services90. Two mechanisms act in synergy: reduced care-seeking behaviors for fear of experiencing stigma and discrimination, and the stigmatizing and discriminatory actions of healthcare staff. Secondary stigma, arising from providing care to stigmatized groups, can also affect health providers and modify their attitudes90. PLHIV with multimorbidity may be treated in services where HIV-related stigma could be compounded by additional stigma associated with specific comorbidities (e.g., depression or liver cancer84) or through lack of experience with PLHIV. Specific integrated or shared care models incorporating specialists in HIV and other staff, and the development of HIV-friendly practices, are promising approaches to providing person-centered, continuous care91,92.

Given the pervasiveness of stigma and discrimination directed at PLHIV in healthcare settings, it is crucial to monitor this experience using validated measures. HRQoL instruments including a stigma dimension (e.g., PROQoL)79 may provide an option for data collection of routine patient-reported outcomes. Some validated instruments, such as the People Living with HIV Stigma Index 2.093 and the HIV Stigma Scale94, which have been validated in various settings around the world with support from PLHIV, monitor longitudinal trends of experienced stigma59. These could be complemented with measures of stigma expressed by healthcare providers95,96,97,98.

Interventions to counter HIV-associated stigma should also be implemented99,100. Such interventions have been evaluated15,101,102,103 and can be categorized as: information-based, structural, biomedical, skill-building, empowerment-based, and contact-centered98. Interventions may be patient-focused or provider-focused, and it is possible that optimal impact may be achieved when combinations of interventions are employed. However, further evidence on the effectiveness of such interventions is needed. At a minimum, all types of healthcare settings should provide PLHIV with information about their human rights and a channel for reporting behaviors and policies that are discriminatory or otherwise infringe upon rights in this setting.

Discussion

While continuing to press for the crucial goal of equitable universal access to ART, health systems must also expand the focus of HIV care. This broader approach will enable PLHIV to experience optimal long-term well-being, consistent with the realization of the human right to enjoy the highest attainable standard of physical and mental health. With this goal in mind, the multidisciplinary expert panel developed this consensus statement on the role of health systems in advancing the long-term well-being of PLHIV. The process resulted in 31 items with which expert panel members expressed high levels of agreement. The consensus statement reflects the current state of knowledge about health-related challenges for PLHIV in the key domains of multimorbidity, HRQoL, and stigma and discrimination, as well as addressing psychosocial needs associated with these issues. Proposed measures for improving the long-term health outcomes of PLHIV build on key principles in the fields of HIV and global health, including principles expressed in the Constitution of the World Health Organization57, the 2030 Agenda for Sustainable Development104, the United Nations Political Declaration on Universal Health Coverage105, and the WHO Framework on Integrated, People-Centered Health Services106. This consensus statement and the associated recommendations for action have the potential to improve the well-being of PLHIV throughout their lives.

It has long been recognized that respecting, protecting, and fulfilling human rights can yield better health outcomes for PLHIV49, yet human rights are contested in ways that undermine many aspects of the HIV response worldwide. As health systems focus more on the long-term care needs of PLHIV, it is imperative to address the human rights challenges that undermine this effort. Discrimination against PLHIV in healthcare settings is one of many such issues that warrant urgent attention80. While some matters are determined by actors outside of health system institutions (e.g., lawmakers adopting laws that regulate certain aspects of how health systems operate and how services are delivered), it is within the power and purview of health system actors (institutions and individuals) to influence many structural factors so as to reduce discrimination and other barriers. Therefore, health systems and the people who work within them must recognize and work to eliminate the multiple forms of structural discrimination that undermine the health of PLHIV. They have an important vantage point as observers of the consequences of such barriers for health and HRQoL and an influential position as advocates, with considerable moral and political persuasion. They also bear responsibility for removing such barriers within healthcare settings, for example by promoting initiatives to hire diverse and inclusive workforces, establishing systems to report and investigate discrimination, and providing health services in geographical locations and at times that will facilitate access for marginalized or vulnerable populations. A pervasive and highly problematic form of structural discrimination is HIV criminalization (i.e., the unjust application of criminal law to people living with HIV based solely on their HIV status), alongside the criminalization and stigmatization of various activities associated with HIV risk107. Other relevant and pressing human rights issues include privacy and confidentiality, personal autonomy, access to justice, and meaningful participation in health decisionmaking108.

Meaningful participation can be advanced by including PLHIV in the development and enactment of policy and programmatic responses, as called for by the widely endorsed Greater Involvement of People Living with HIV Principle109. PLHIV have unique insight into the factors that positively and negatively affect their well-being. Their perspectives are essential in the formulation of effective strategies both at the policy and the service delivery levels110. The 2021 United Nations Political Declaration on HIV and AIDS called for the expansion of community-led HIV service delivery to comprise at least 30% of testing and treatment-related services by 2025111. This target is even more important in the context of improving the long-term health-related outcomes of PLHIV. Community-based health and psychosocial service providers can do more than supplement government and private services; they also are well-suited to identify innovative and cost-effective models of care and to engage marginalized and vulnerable populations19,110. Efforts to address the needs of PLHIV in relation to multimorbidity, HRQoL, and stigma and discrimination can be greatly enhanced through the involvement of communities in setting the research and programmatic agendas, as well as in direct service delivery; such activities need to be sustainably supported and financed.

Evidence suggests that living long-term with HIV can bring episodic functional concerns112. Continuous assessment in routine care is essential for anticipation, detection, and management of fluctuating concerns. Such care should include HRQoL measures that take a multidimensional approach, reflecting what matters to PLHIV, including concerns such as stigma and social function72,113. For self-reported HRQoL outcomes to inform care delivery in a more person-centered manner, health systems and service organizations must pay careful attention to language, culture, and local and individual priorities regarding well-being. Data should be collected and used within a meaningful patient-provider relationship in order to optimize validity and reliability114. This has been achieved even in resource-limited settings with poor literacy and advanced HIV infection115. Locally developed systems in Africa, for example, have enabled patients to self-report using a “hand-scoring” system116. Other systems support community caregivers of people with cancer and HIV in India and African countries to collect self-reported patient outcomes using mHealth, providing data directly to a provider “dashboard” to inform the allocation of staff resources to those most in need117. A growing body of evidence indicates that service delivery approaches to HIV care can incorporate attention to patient experiences and concerns in high-prevalence, low-resource areas85,118.

The expert panel carried out its work with the understanding that health systems vary substantially across, and often within, countries. Patterns of multimorbidity likewise vary greatly across geographical regions. Monitoring progress in the global HIV response requires a set of standardized indicators of health behaviors and comorbidities that contribute substantially to the global multimorbidity burden119. To the extent that resources allow, health systems are strongly encouraged to monitor these behaviors and comorbidities and to solicit input from PLHIV on additional national monitoring priorities1,120. Although many national health systems are not currently monitoring HRQoL, stigma, or discrimination among PLHIV, they should, at a minimum, include indicators from the UNAIDS Global AIDS Strategy 2021–2026, in order to standardize monitoring.

In its Global AIDS Strategy, UNAIDS set ambitious 2025 targets. It established 10 result areas that broadly aim to achieve equitable access to fully-resourced and integrated HIV services for all people living with or at risk of HIV. Priority actions, which support the targets and result areas, are generally aimed at national governments, though nearly all require support from non-government stakeholders. While priority actions may vary by geographic region, even in the context of limited resources, our consensus statement offers concrete recommendations regarding multimorbidity, HRQoL, and stigma and discrimination that all health systems should aspire to implement. The consensus points and next steps (Box 3) articulate the direction in which healthcare for PLHIV should evolve in all countries, emphasising that a reorientation of health systems will necessarily be incremental. The expert panel also recognises that the evidence base underpinning its conclusions is limited in some ways but rapidly growing. Thus the consensus statement should be regarded as an initial articulation of a transformational process, to be refined as stakeholders in government, civil society, research, healthcare and the social and legal sectors deepen their understanding of how health systems can support PLHIV in achieving optimal well-being.

Across the three Delphi rounds, three consensus points (2.4, 4.1, and 4.4) generated lower overall agreement than the others. This was reflected in our decision to continue to evaluate them on a four-point Likert scale in the third Delphi round instead of the binary agree/disagree measurement used with the other points. The results from that round revealed a continued, relatively lower level of agreement for two of the statements (2.4 and 4.1) (Table 3). The lack of unanimity here may highlight a lack of consensus among different types of stakeholders in the broader HIV field regarding whether some issues (e.g., pain) should be prioritized in health system efforts to improve health outcomes for PLHIV. It may also reflect the lack of shared conceptual frameworks for other issues such as stigma and discrimination, punitive laws, and intersectionality, pointing to a possible need to engage a wider range of stakeholders in dialog about these issues.

Limitations and strengths

The Delphi process involving a virtual expert panel enables the systematic gathering of the collective knowledge and recommendations of leaders in the field while separated by physical distances27,121. However, this process has both limitations and strengths. Typical of the Delphi method, the research team used purposive sampling to recruit potential expert panel members from existing HIV networks. The initial roster was then expanded using snowball sampling to include a wider range of experts and, potentially, viewpoints. The use of English in conducting the study may have restricted the composition of the expert panel and, by extension, the study outputs. The size of Delphi panels can range widely. This study included 44 individuals, which is within the 10 to 50 generally recommended for expert panels122. Members were from 22 countries across the six WHO regions. We note that 25% of them worked in a country different from their country of origin and speculate that their assessment of consensus points may have benefitted from their diverse backgrounds. However, this also meant that in the case of Africa, with its disproportionate burden of HIV, two of the six African members no longer worked on the continent. Thus, it is not clear to what extent they considered the African context in their assessment of consensus points. That the composition of the panel reflected activities spanning research, service provision, community-based care, policy, and advocacy provided the project with expertise and knowledge regarding the priorities of diverse stakeholder groups.

An advantage of using scoping reviews for the three domains is that expert panel members could draw on their knowledge and experience to focus on issues that pertain to improving the well-being of PLHIV but may not yet be extensively documented in the peer-reviewed or gray literature. A further strength of the study was the collection of open-ended (text-based) comments from respondents who agreed with statements (e.g., for further input and suggested edits), as well as from respondents who disagreed (e.g., to understand their rationale and suggested changes). This elicitation and incorporation of feedback from respondents across all three survey rounds (with high response rates, i.e., R1, R2 = 86%; R3 = 91%) and the online meeting were likely critical to the consistent increase in levels of agreement.

Finally, the worldwide relevance of the expert panel’s consensus is suggested by the fact that the consensus statement had been endorsed by 67 organizations (Box 2) at the time this article went to press.

Conclusion

Prevention and treatment of HIV infection including access to ART remain a major public health and human rights challenge that requires urgent, sustained attention. This consensus statement addresses the concurrent role of health systems in advancing the long-term well-being of PLHIV. Multimorbidity, HRQoL, and stigma and discrimination continue to be major issues for PLHIV, including those who have achieved viral suppression and in particular those from marginalized populations.

The consensus statement was prepared by a large multidisciplinary panel of experts representing the interests of a diverse range of stakeholders including HIV community members. Its purpose was to facilitate consensus on major health-related issues affecting PLHIV to be addressed from a patient-centered perspective, noting that many issues are not captured in current HIV monitoring processes and guidelines. While additional research is needed, the burden of creating new, simple, standardized indicators for insufficiently addressed issues will largely fall on international bodies such as WHO and UNAIDS, both of which have mechanisms for community consultation and engagement. This process will require a strong commitment from all Member States, which must report on the indicators and implement policies to enhance health system performance. We encourage these organizations and national health system monitoring bodies to continue to take on this task, to report at regular intervals, and to meaningfully involve PLHIV, even when additional costs are involved. PLHIV and civil society organizations should also play a role in reporting ways in which governments are not meeting their obligations. Ultimately, a concerted effort by all stakeholders is required to ensure the long-term well-being of the millions of people around the world living with HIV and to end the HIV pandemic.

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Acknowledgements

The authors acknowledge the editorial and analytical contributions of Trenton M. White, support implementing the Delphi methodology by Ansley Hobbs, and editorial review by Beatriz Grinsztejn.

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J.V.L. and K.S.H. conceived of the consensus statement, which was chaired by J.V.L., A.K., N.D., and R.B.L. J.V.L .and K.S.H. established the expert panel and steering committee, convened both groups in meetings and Delphi rounds, and drafted and revised the consensus points and manuscript. J.A., R.B.L., G.B., G.C., N.D., M.J.F., R.H., A.K., and C.S. provided conceptual guidance towards drafting the consensus points. G.B. and A.K. led the multimorbidity scoping review; J.A. and G.C. led the stigma and discrimination scoping review; and R.H. and M.J.F. led the HRQoL scoping review. D.R. ensured the rigor of the Delphi methodology employed, oversaw its implementation, and contributed to data analysis. J.A., S.B., D.B., G.B., S.B., C.C., P.C., P.E.C., G.C., G.S.C., A.A.M., J.A., R.E., W.M.E., M.J.F., R.H., M.H., S.H., A.K., M.K., J.V.L., K.M., D.N., T.N., A.P., P.R., C.S., K.S., and D.S. contributed to editing the manuscript. All co-authors participated in the Delphi rounds and approved the final manuscript.

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Correspondence to Jeffrey V. Lazarus.

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Lazarus, J.V., Safreed-Harmon, K., Kamarulzaman, A. et al. Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV. Nat Commun 12, 4450 (2021). https://doi.org/10.1038/s41467-021-24673-w

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