To comprehensively describe the nature and extent of the health of people aging with HIV in Canada, a series of measures are collected at 18-month intervals by self-reporting, questionnaires, objective measures, and biomarkers (Tables S1 and S2). The goal is to collect 2–3 sets of evaluations per participant to describe changes in health over time. Each set of evaluations is administered over 3 visits to reduce cognitive fatigue and allow research coordinators to build rapport with study participants by the time more sensitive topics are evaluated (e.g., sexual satisfaction). On average, each study visit requires between 15 and 75 min to complete. The data collection is standardized across sites, utilizing standardized operational procedures developed by the project manager, who trains the site staff in the administration of the tools. During the first 2 years of the study, the majority of assessments were coordinated with routine in-person clinical visits and completed with the research coordinator on site. However, since the start of the COVID-19 pandemic, where possible, assessments were virtually conducted with the participants completing questionnaires online, over the phone, or using video with a research coordinator.
In the CHANGE HIV cohort, health is evaluated across 7 domains, including chronic disease, mental health, pain, social support, quality of life, cognitive function, and physical function using measurement tools outlined in Table S1 [6 (link),7 (link),8 (link),9 (link),10 (link),11 (link),12 (link),13 (link),14 ,15 (link),16 (link),17 (link),18 (link),19 (link),20 (link),21 (link),22 (link),23 (link),24 (link),25 (link),26 (link),27 (link),28 (link),29 (link),30 (link)]. In addition to this, a healthy aging score is calculated using a The Rotterdam Healthy Aging Score [30 (link)]. The data on determinants of health, including behavioral, economic, social, health and social services, physical environment, and personal factors are collected through self-report and questionnaires (Table S2) [31 (link),32 (link),33 (link),34 (link),35 (link),36 (link),37 (link),38 (link),39 (link),40 (link),41 (link),42 (link),43 (link)]. HIV-related parameters are assessed using chart reviews and laboratory testing as part of routine clinical care, including an in-depth evaluation of antiretroviral therapy exposure history and adherence, illness duration, exposure category, opportunistic infections, and other complications. The data on concomitant prescription, over-the-counter, and herbal medication use are collected in addition to vaccination history and use of facial fillers. All components of medical history are corroborated through a review of the medical record, in addition to the personal report. The participants have the option of contributing to a sub-study by providing blood samples and nasal and rectal swabs to assess for correlation between the microbiome and markers of immune activation with healthy aging.
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