Participant Stakeholder Characteristics
Sixty-nine stakeholders from Canada (90%; n=62), the United Kingdom (7%; n=5), United States (1%; n=1) and Australia (1%; n=1) with expertise in the field of HIV, aging with HIV and rehabilitation attended the Forum. Most were researchers (22%; n=15), followed by educators (17%; n=12), service providers (13%; n=9), community members, people living with HIV and other chronic illnesses (6%; n=4), graduate students (13%; n=9), clinicians (6%; n=4), and other stakeholders including coordinators and program managers (23%; n=16). Stakeholders worked in community-based organizations (29%; n=20), academic institutions (26%; n=18), community or institutional healthcare organizations (16%; n=11), research or knowledge production organizations (14%; n=10), and organizations representing government or industry (14%; n=10). Of the 69 stakeholders, 16 (23%) were speakers at the Forum; of these 13 (81%) were from Canada, two (13%) from the United Kingdom, and one (6%) from the United States.
Framework of Research Priorities in HIV, Aging and Rehabilitation
The “Framework of Research Priorities in HIV, Aging and Rehabilitation” reflects how rehabilitation interventions have a critical role in addressing the complex health and social challenges experienced by individuals as they age with HIV and multimorbidity. It highlights priorities for HIV, aging and rehabilitation research, and offers a scaffold for collaboration among multidisciplinary teams to generate evidence on healthy aging with HIV. The Framework is comprised of seven research priorities: 1) examining the nature, extent and impact of disability resulting from concurrent health conditions and chronic inflammation aging with HIV; 2) examining the prevalence, severity and impact of frailty; 3) exploring community and social participation aging with HIV; 4) identifying strategies for chronic disease management and healthy aging with HIV; 5) examining facilitators and barriers to access and engagement in, rehabilitation; 6) determining the effectiveness of rehabilitation interventions to support healthy aging with HIV; and 7) advancing the development, property assessment, and use of screening tools and patient reported outcome measures (PROMs) in HIV and aging research (Figure 1). These priorities were clustered into three broader content areas: A) Multimorbidity, Episodic Health and Disability; B) Rehabilitation Interventions for Healthy Aging across the Lifespan; and C) Outcome Measurement in HIV and Aging Research. The Framework includes methodological considerations identified from the consultation through which to approach the priorities, and highlights the importance of knowledge translation and exchange to mobilize research evidence into future practice, programs and policy (Figure 1). The Framework is intended to inform future HIV, aging and rehabilitation research and to serve as a knowledge transfer and exchange tool that may be used by researchers, clinicians, students, people living with HIV and the broader HIV community. The priorities are presented below in no particular order of importance.
Content Area 1: Multimorbidity, Episodic Health and Disability
Stakeholders highlighted the importance of multimorbidity prevention and health promotion as people age with HIV. This includes people living with HIV at all ages, and particularly older adults experiencing challenges due to the impact of years living with HIV, side effects of antiretroviral medications, and adults diagnosed with HIV in older adulthood.
Research Priority 1: Nature, Extent and Impact of Disability associated with Concurrent Health Conditions and Chronic Inflammation among People Aging with HIV
Research should seek to understand the prevalence, severity and impact of disability (19), including experiences of people aging with HIV and the added complexities that come from living with concurrent health conditions. Mental and cognitive health challenges such as depression, anxiety, and HIV-associated neurocognitive disorder (HAND) should also be considered. Concurrent health conditions experienced by people aging with HIV can be episodic in nature whereby the duration and intensity of illness and its resulting disability are unknown. Uncertainty was a specific domain of disability highlighted as a priority for people aging with HIV as a consequence of episodic illness, affecting stable employment and housing, and imposing restrictions on social engagement.
Stakeholders also highlighted the importance of exploring disability associated with inflammation and aging with HIV. Inflammation may increase risk for metabolic, bone, or cardiovascular health conditions (50-52). Researchers should examine the association between chronic inflammation and disability among individuals aging with HIV; however, to our knowledge, there is a dearth of research considering the association between the inflammatory processes and daily physical and cognitive function with HIV. Better understanding the effects of chronic inflammation on disability aging with HIV can assist health care providers to develop targeted interventions aimed to manage disability over time.
Research Priority 2: Frailty
Frailty is defined as an age-related syndrome to characterize a loss of reserves (energy, physical ability, cognition, health) that can yield to increased vulnerability and susceptibility to adverse clinical outcomes, such as hospitalization and disability (53, 54). Stakeholders highlighted frailty as an emerging priority for adults aging with HIV. Research should examine the prevalence, severity and impact of frailty among adults aging with HIV, and the association between frailty and domains of disability (physical, mental, social and uncertainty domains) to develop strategies to prevent or minimize frailty among people living with HIV.
Research Priority 3: Community and Social Participation Aging with HIV
Stakeholders indicated how those diagnosed prior to the era of combination antiretroviral therapy might now be transitioning into retirement age with a history of unemployment and limited income support. This can result in unstable housing, and added stress and anxiety, subsequently limiting engagement with others in social settings and resulting in social isolation (55, 56). In addition, stigma associated with HIV and aging emerged as an important contextual factor that may interact with gender, employment status, and ethnocultural background, further exacerbating challenges to community and social participation. Research should consider the experiences of people living with HIV as they transition into older age, and how differences in timing of HIV diagnosis in the pre or post combination antiretroviral therapy era can result in differences in community and social participation. Further research should seek to better understand the unique housing and social engagement needs of adults aging with HIV and multimorbidity. Researchers should collaborate with policy stakeholders and housing service providers to explore creative evidence-informed solutions to increase accessibility and affordable housing for adults aging with HIV.
Content Area 2: Rehabilitation Interventions for Healthy Aging across the Lifespan
Stakeholders emphasized the importance of rehabilitation interventions to address and prevent disability associated with aging with HIV and multimorbidity. Three research priorities were identified in this content area.
Research Priority 4: Strategies for Chronic Disease Management and Healthy Aging with HIV
Stakeholders highlighted the importance of identifying factors that facilitate healthy aging with HIV. This requires recognizing that goals, values, preferences and expectations may differ depending on age and length of time living with HIV. Self-management can be defined as “an individual's ability to manage the symptoms, treatment, physical and psychosocial consequences living with a chronic condition” (57). In the Forum discussion, self-management strategies emerged as a key component of healthy aging along with resilience, characterized as the ability to recover from longstanding episodic and chronic challenges living with HIV. Rehabilitation interventions that address the multidimensional and episodic nature of disability can reinforce and promote self-management skills for disability associated with HIV and aging (20, 58, 59). Goal setting, promoting independence, enhancing recovery, recognizing progress, and valuing reassurance from others are key aspects of self-management support, and integral to developing self-efficacy through the rehabilitation process among people with chronic disease (60). However, to date there is a paucity of research that examines models of health care that integrate these approaches. Future research should examine the impact of adopting living strategies, including resilience and self-management in the context of chronic disease management to promote healthy aging with HIV.
Research Priority 5: Examining Facilitators and Barriers to Access and Engagement in Rehabilitation for People Aging with HIV
The role and importance of rehabilitation for healthy aging with HIV emerged from the consultation; however, stakeholders highlighted barriers that exist in accessing formalized services. Navigating the healthcare system for people living with HIV can be challenging with other competing life priorities (e.g., food, shelter). Developing coordinated access to rehabilitation services through partnerships between healthcare providers and community-based organizations are integral for helping to navigate the system and identify where people aging with HIV may access services. For those with access to rehabilitation services, stakeholders highlighted the need to examine the nature and extent to which people living with HIV engage in rehabilitation and self-management interventions, such as physical activity and exercise.
Stakeholders further highlighted the need for evaluating the effect of educational interventions and strategies aimed to increase knowledge about the role of rehabilitation among current and future health professionals, recreation and community providers, and people aging with HIV. At Realize, connections are facilitated between HIV organizations and universities through role-emerging placements for physiotherapy and occupational therapy students (61). Members of this team have developed educational modules for people living with HIV and rehabilitation professionals to enhance knowledge, skills and attitudes working in HIV care (62, 63). Future research may examine the impact of new models of rehabilitation service delivery including interdisciplinary educational interventions on their ability to enhance knowledge and access to rehabilitation interventions for people living with HIV.
Research Priority 6: Determining the Effectiveness of Rehabilitation Interventions to Support Healthy Aging with HIV
Stakeholders identified the need to evaluate the effect and translation of rehabilitation interventions to address the intersecting physical, social and mental health domains of disability experienced by adults aging with HIV. Rehabilitation interventions under evaluation should take into account the social determinants of health and diversity of populations of adults aging with HIV related to gender, social roles, age, duration of time living with HIV, literacy, multimorbidity, culture, race, geographic location and access to health services. It is important to understand the complexity of health issues faced by people living with HIV when evaluating rehabilitation interventions and models of rehabilitation service delivery (29, 30). People aging with HIV should be actively involved in the planning of rehabilitation interventions to ensure approaches align with person-centered goals, values, preferences and diversity of the target audience. Physiotherapy is important for improving locomotor performance, strength, health related quality of life, and flexibility (34). As the need for rehabilitation emerges and community health centers and clinics integrate physiotherapists and occupational therapists as members of the interdisciplinary team, there is an opportunity to maximize timely, appropriate and effective implementation and evaluation of rehabilitation services and interventions with the potential to optimize health outcomes for people living with HIV. Finally, as the role for rehabilitation continues to grow in the context of HIV and aging, stakeholders highlighted the importance of examining the need for evaluating the role of technology such as wireless physical activity monitors, online applications, and social media, in measuring and augmenting engagement in rehabilitation.
Content Area 3: Outcome Measurement in HIV and Aging Research
In addressing priorities related to episodic disability and the effect of rehabilitation interventions and education, stakeholders highlighted the need to advance outcome measurement in HIV and aging research, specifically developing and assessing tools for their ability to accurately and reliably measure indicators of health and disability for adults aging with HIV. We highlight a few specific constructs highlighted as important to HIV, rehabilitation and aging.
Research Priority 7: Advancing the Development, Property Assessment, and Use of Screening Tools and Patient Reported Outcome Measures (PROMs)
Stakeholders identified the need to develop and advance HIV-specific person-centred screening tools and outcome measures to facilitate assessment and evaluate the effectiveness of interventions. Accurately and reliably screening for frailty was highlighted as a priority among adults aging with HIV to pre-emptively target strategies to prevent further progression. Measurements of frailty such as the Frailty Phenotype (53), Index (64), or Scale (65) exist; however with no gold standard assessment for HIV-associated frailty, there is a need to identify and validate which tools capture the presence and severity of frailty and can detect changes in frailty when it occurs among adults living with HIV. Stakeholders also emphasized the need to enhance patient-centeredness in research for older adults living with HIV by using Patient Reported Outcome Measures (PROMs) to evaluate disability experienced aging with HIV, facilitate communication between patients and providers, and examine the effectiveness of rehabilitation interventions.
Methodological Considerations
Our consultation process was not limited to research content areas alone. Methodological considerations for addressing these seven research priorities also emerged from the consultation. Stakeholders recommended that researchers consider barriers to engaging in research, such as stigma, and the need for culturally safe, anti-oppressive and age-sensitive interventions to better engage adults aging with HIV. For example, strategies for better engaging Indigenous adults aging with HIV in colonized countries such as Canada, new migrants living with HIV, individuals in rural geographical regions as well as those who may be experiencing stigma and fear of disclosure. Community engaged approaches, involving people living with HIV in all aspects of the rehabilitation research is critical for ensuring the research is meaningful and relevant to the community (66-69). Strategies such as the Strategy for Patient Oriented Research (SPOR) (70), and incorporating culturally appropriate, age-sensitive, valid, and reliable PROMs, were also recommended to yield better outcomes. Given the barriers to accessing rehabilitation in environments of fiscal restraint, researchers should include cost effectiveness outcomes in research evaluating rehabilitation interventions with older adults living with HIV. Other methodological considerations include considering the use of HIV-negative comparison groups, comprised of people matched in terms of age, gender and other important characteristics, to sample populations of people aging with HIV.
Knowledge Translation and Exchange
The final component of the Framework includes recommendations for translating research into practice, programs, and policy to enhance access to timely and effective rehabilitation interventions for people living with HIV. Stakeholders discussed the importance of linking research with practice, highlighting the necessity for research to be driven by the needs of communities of practice, and to ensure that research evidence is translated in a way to meaningfully impact programs and policy. Developing evidence-informed recommendations can facilitate translation of research into practice and optimize health outcomes for people aging with HIV. Members of our team established recommendations for rehabilitation among older adults with HIV, drawing on high-level evidence in other chronic conditions (21). As new evidence emerges specific to rehabilitation interventions among people aging with HIV and multimorbidity, we will be able to revisit and enhance such recommendations incorporating HIV-specific literature. Strategies are also needed to facilitate the application of research knowledge generated from these priority areas. Mechanisms such as International Forums on HIV and Rehabilitation Research can facilitate translation of research evidence on HIV and rehabilitation in partnership with other annual conferences and providing open access to presentations and research findings (71) (http://cihrrc.hivandrehab.ca/forums.php).