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Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV
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Download the PDF here
July 16 2021 Nature Communications
this emerged during IAS as a session at IAS was focused around discussion on this topic. But this is not the first statement if its type merging from European poly/HIV researchers. Jeffrey Lazarus a few years ago published similar calls to update our HIV health care systems to address these problems & aging, but this is a broader sign on Consensus Statement including many European researchers and others in Europe, the list of all of them is contained herein.
A new paradigm is needed for addressing multimorbidity in PLHIV.
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.
A new paradigm is needed for addressing multimorbidity in PLHIV.
• 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-effectively.
• 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 needs 53. 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.
• 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.
• 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 services
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.
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Jeffrey V. Lazarus1✉, Kelly Safreed-Harmon1, Adeeba Kamarulzaman2,3,Jane Anderson4, Ricardo Baptista Leite5, Georg Behrens6, Linda-Gail Bekker7,Sanjay Bhagani8, Darren Brown9, Graham Brown10, Susan Buchbinder11,Carlos Caceres12, Pedro E. Cahn13, Patrizia Carrieri14, Georgina Caswell15,Graham S. Cooke16, Antonella d'Arminio Monforte17, Nikos Dedes18,Julia del Amo19, Richard Elliott20, Wafaa M. El-Sadr21,María José Fuster-Ruiz de Apodaca22,23, Giovanni Guaraldi24,Tim Hallett16, Richard Harding25, Margaret Hellard26, Shabbar Jaffar27,Meaghan Kall28, Marina Klein29, Sharon R. Lewin30,31,32, Ken Mayer33,Jose A. Pérez-Molina34, Doreen Moraa35, Denise Naniche1, Denis Nash36,Teymur Noori37, Anton Pozniak9,38, Reena Rajasuriar2, Peter Reiss39,Nesrine Rizk40, Jürgen Rockstroh41, Diana Romero36, Caroline Sabin42,David Serwadda43& Laura Waters44
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.
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.
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.
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.
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