Of the 54 stakeholders who registered for the International Forum on HIV, Aging and Rehabilitation Research (19 speakers; 2 rapporteurs; 33 attendees), 35 (65%) attended the event from the UK (n = 29), Canada (n = 5) and Ireland (n = 1). The majority of stakeholders represented persons living with HIV or representatives from community-based organizations (n = 12; 34%) and/or researchers or academics (n = 10; 28%), service providers (n = 6; 17%), clinicians (n = 4; 11%); and trainees (n = 4; 11%). Researchers and clinicians were primarily rehabilitation professionals (physiotherapists or occupational therapists), physicians (infectious diseases), and nurses. Stakeholders worked in community-based organizations (n = 15; 43%), academic institutions (n = 12; 34%); hospital or community healthcare organizations (n = 6; 17%), or in non-governmental or private organization (n = 2; 6%). Of the 35 stakeholders, 19 (54%) were speakers at the Forum.
Research Priorities in HIV, Aging and Rehabilitation
Evidence presented at the Forum aligned with the Framework of Research Priorities in HIV, Aging and Rehabilitation by addressing the following areas: disability, frailty, social participation, access to and impact of rehabilitation, and patient-reported outcome measures in HIV and aging. The focus on rehabilitation interventions and strategies for healthy aging with HIV included digital health and web-based interventions and supportive networks.
Five priorities emerged from the Forum, all of which aligned with the original priorities, and three component content areas of the original 2016 Framework (16): A – Episodic Health, Multimorbidity and Disability Aging with HIV (i) episodic disability and uncertainty, ii) frailty, iii) social participation); B - Rehabilitation Interventions for Healthy Aging across the Lifespan (iv) examining the role, implementation and impact of digital and web-based rehabilitation interventions with adults aging with HIV) and C – Outcome Measurement in HIV and Aging (v) using digital health technology to measure physical activity). Stakeholders highlighted the importance of learning from the broader aging and rehabilitation field, and the importance of knowledge transfer and exchange among researchers, clinicians, people living with HIV, trainees, and the broader community (Fig. 1). The research priorities related to web-based and digital health interventions build on the priorities in the original Framework, strengthening the scaffold for collaborations on research related to rehabilitation interventions to promote healthy aging with HIV. We describe more detail in each of the priorities areas below.
Component A – Episodic Health, Multimorbidity and Disability Aging with HIV
Stakeholders emphasized the importance of addressing i) episodic disability and uncertainty, ii) frailty, and iii) social participation among adults aging with HIV across the lifespan (which align with Priorities 1–3 in the original Framework) (Fig. 1).
i. Episodic disability & uncertainty:
Stakeholders highlighted the importance of examining the nature and severity of episodic disability (physical, cognitive, mental-emotional, daily activities, social inclusion), and specifically the uncertainty that may be experienced among adults aging with HIV across the lifespan. This included examining episodic disability in the context of longstanding and historic HIV pharmacological interventions among older adults with HIV.
ii. Frailty and other concurrent health conditions:
Stakeholders identified the importance of examining disability associated with frailty in combination with other health conditions across the life span, including but not limited to, osteoporosis, menopause, chronic pain, cardiovascular disease. Considerations of biological age versus time since HIV diagnosis was highlighted by stakeholders and the importance of considering the life course of adults aging with HIV (regardless of time of HIV diagnosis) and distinguishing between different phenotypic forms of frailty: weakness, slowness, exhaustion, low physical activity, and unintentional weight loss. Stakeholders highlighted an evidence to practice gap on frailty, aging and HIV and the need for a better understanding among researchers and clinicians on how to prevent, detect and address frailty in adults aging with HIV.
iii. Social participation, engagement and relationships among adults aging with HIV:
Stakeholders highlighted the importance for researchers to consider the social and interpersonal needs of adults aging with HIV and the emotional, sexual health, intimacy and connectedness associated with relationships among adults aging with HIV. While stakeholders acknowledged this priority in the original Framework, they emphasized the relevance of social connectedness due to a lack of in-person interactions during the COVID-19 pandemic. Stakeholders discussed how the COVID-19 pandemic necessitated changes in how people interacted socially and maximized the use of digital resources where possible. While stakeholders acknowledged positively enhancements to social interactions with digital technology, others cautioned the digital divide, lack of access and digital literacy that could limit social engagement among adults aging with HIV.
Component B – Rehabilitation Interventions for Healthy Aging across the Lifespan
Stakeholders highlighted the need to examine the role, implementation and impact of digital health and web-based rehabilitation technologies, which aligned with Priority 6 in the original Framework. This examines the role of technology (wireless physical activity monitors, online apps, websites, social media, online tele-coaching) in augmenting engagement in rehabilitation interventions among adults aging with HIV (Fig. 1).
iv. Role, implementation and impact of digital and web-based rehabilitation interventions and health technologies:
Stakeholders discussed the need to examine the uptake and usage of digital health technologies among adults aging with HIV and health and rehabilitation providers, and evidence-based person-centred approaches to digital technology and web-based rehabilitation interventions. Stakeholders also raised the potential role and impact of artificial intelligence for rehabilitation (adaptation, implementation, trust) among adults aging with HIV. Stakeholders highlighted the importance of considering the costs associated with implementation of digital health interventions, and financial barriers to accessing online interventions, which may be limited by financial, policy, or programmatic barriers. Future research should examine different models of implementation of digital health technology, their cost and accessibility in the context of aging with HIV.
Component C – Outcome Measurement in HIV and Aging Research
Stakeholders identified the potential role for digital health technology to measure engagement in physical activity among adults aging with HIV, which aligned with Priority 7 in the original Framework (advancing the development and use of patients reported outcome measures in HIV, aging and rehabilitation) (Fig. 1).
v. Using Digital and Web-Based Rehabilitation Health Technology to Measure Physical Activity:
Stakeholders identified the potential for evaluating the impact of rehabilitation interventions including web-based interventions and digital health tools (such as wearables, wireless physical activity monitors, apps, gamification) on engagement in social connectedness interventions, and physical activity and the potential impact on disability and health outcomes among adults aging with HIV.
Collectively, stakeholders acknowledged that digital health technology in HIV and aging was not a one-size fits all approach, nor a replacement for in-person health and rehabilitation services or HIV care. There still exists a role and importance and need for in-person models of delivery, and while basic forms of technology (e.g. telephone for fostering peer-support) may be simple, they can be effective. While technology may serve as a potential tool to facilitate engagement and mitigate fragmentation of health, social and rehabilitation services for persons aging with HIV, there is a need to balance technology interventions with individual need, access, literacy and comfort.
Methodological Considerations, Knowledge Translation and Exchange
Methodological considerations for addressing these research priorities also emerged from the consultation that complemented the original Framework of Research Priorities. Stakeholders recommended that researchers consider barriers to engaging in research, such as stigma, and the need for culturally safe, anti-oppressive and age-sensitive approaches to research on rehabilitation to better engage adults aging with HIV. For example, strategies for better engaging women, Indigenous and Métis adults aging with HIV in colonized countries such as Canada, persons who use drugs, racialized groups, 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.
Given the focus on rehabilitation interventions, attendees highlighted the importance of implementation science approaches for assessing how interventions are taken up and their impact in the ‘real world’ setting, and how interventions might be adopted in the broader context of policy and programs for adults aging with HIV (23, 24). Attendees highlighted the need to examine public health policies and the importance of linking research to practice and programs that improve health outcomes for adults aging with HIV. Specific methodological considerations raised by stakeholders pertained to digital health technology, including the importance of implementing digital and web-based rehabilitation interventions into research and practice. Technology was highlighted as a potential catalyst or channel to facilitate communication among patients and providers (not the end goal or intervention itself).
Some final considerations, recommendations or key messages from the Forum included: recognizing that old and new technologies are both important for enhancing rehabilitation among adults aging with HIV, including engaging in physical activity, and fostering personal connections with other peers, health or rehabilitation providers, or fitness personnel. Stakeholders described technology as a vehicle of communication, and the importance of clear communication to wide audiences pertaining to terms in areas of physical rehabilitation and aging such as frailty, vulnerability, susceptibility and social vulnerability. Of note, the concept, and the very mention, of aging can yield different conceptualizations for different people and is important to consider in approaching research.