Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.

HIV cure research requires interrogating latent HIV reservoirs in deep tissues, which necessitates autopsies to avoid risks to participants. An HIV autopsy biobank would facilitate this research, but such research raises ethical issues and requires participant engagement. This study explores the willingness to participate in HIV cure research at the end of life. Participants include Canadians with HIV [people with HIV (PWHIV)] aged 55 years or older. Following a mixed-method study design, all participants completed a phone or online survey, and a subset of participants participated in in-depth phone or videoconference interviews. We produced descriptive statistics of quantitative data and a thematic analysis of qualitative data. Barriers and facilitators were categorized under domains of the Theoretical Domains Framework. From April 2020 to August 2021, 37 participants completed the survey (mean age = 69.9 years old; mean duration of HIV infection = 28.5 years), including 15 interviewed participants. About three quarters of participants indicated being willing to participate in hypothetical medical studies toward the end of life (n = 30; 81.1%), in HIV biobanking (n = 30; 81.1%), and in a research autopsy (n = 28; 75.7%) to advance HIV cure research, mainly for altruistic benefits. The main perceived risks had to do with physical pain and confidentiality. Barriers and facilitators were distributed across five domains: social/professional role and identity, environmental context and resources, social influences, beliefs about consequences, and capabilities. Participants wanted more information about study objectives and procedures, possible accommodations with their last will, and rationale for studies or financial interests funding studies. Our results indicate that older PWHIV would be willing to participate in HIV cure research toward the end of life, HIV biobanking, and research autopsy. However, a dialogue should be initiated to inform participants thoroughly about HIV cure studies, address concerns, and accommodate their needs and preferences. Additional work is required, likely through increased community engagement, to address educational needs.

Cohort profile: the Ontario HIV Treatment Network Cohort Study (OCS).

The Ontario HIV Treatment Network Cohort Study (OCS) is an observational, open dynamic cohort of people who are receiving medical care for human immunodeficiency virus (HIV) infection in Ontario, Canada. Established in the mid-1990s, the OCS has its roots in AIDS activists' demands for research that would improve the quality of life of people living with HIV while respecting their privacy. It is a collaborative and community-driven study, including a Governance Committee made up of people with HIV and other stakeholders that evaluates analysis project proposals for community relevance and ethics. From 1995 to 2010, a total of 5644 participants were enrolled and 27,720 person-years of observation were accumulated; follow-up will continue until at least 2015. In the initial years of study, the focus was on clinical data from medical chart reviews. It has since evolved into a comprehensive study that collects extensive de-identified information on clinical, laboratory and psychosocial and behavioural measures based on medical chart abstractions, interviews using a standardized questionnaire and linkage with external administrative health databases in Ontario. Interested collaborators are encouraged to submit analysis project proposals as instructed on the study website (www.ohtncohortstudy.ca).

Increase in transmitted HIV drug resistance among persons undergoing genotypic resistance testing in Ontario, Canada, 2002-09.

OBJECTIVES: To characterize persons undergoing HIV genotypic resistance testing (GRT) while treatment naive and to estimate the prevalence of transmitted HIV drug resistance (TDR) among HIV-positive outpatients in Ontario, Canada. METHODS: We analysed data from a multi-site cohort of persons receiving HIV care. Data were obtained from medical chart abstractions, interviews and record linkage with the Public Health Laboratories, Public Health Ontario. The analysis was restricted to 626 treatment-naive persons diagnosed in 2002-09. TDR mutations were identified using the calibrated population resistance tool. We used descriptive statistics and regression methods to characterize treatment-naive GRT test uptake and patterns of TDR. RESULTS: Overall, 53.2% (333/626) of participants had baseline GRT. The proportion increased with year of HIV diagnosis from 30.0% in 2002 to 82.6% in 2009 (P < 0.0001). Among those tested, 13.6% (CI 9.9-17.3%) had one or more drug resistance mutations, and 8.8% (CI 5.7-11.8%), 4.8% (CI 2.5-7.2%) and 2.7% (CI 1.0-4.5%) had mutations conferring resistance to nucleoside/tide reverse transcriptase inhibitors (NRTIs), non-nucleoside reverse transcriptase inhibitors (NNRTIs) and protease inhibitors (PIs), respectively. TDR prevalence increased from 2002-07 to 2008-09 (adjusted OR 3.7, 95% CI 1.7-8.2), driven by a higher proportion with NRTI (18.2% versus 5.9%, P = 0.0009) and NNRTI mutations (11.7% versus 2.8%, P = 0.004) in the later time period. PI TDR remained unchanged. CONCLUSIONS: Baseline GRT increased dramatically since 2002, but remains below 100%. The prevalence of overall TDR tripled due to increases in NRTI and NNRTI mutations. These findings highlight the value of routine baseline GRT for TDR surveillance and patient care.

Conceptualizing the integration of HIV treatment and prevention: findings from a process evaluation of a community-based, national capacity-building intervention.

OBJECTIVE: This paper responds to a gap in knowledge about the conceptualization of integration in community-based AIDS organizations (CBAOs). METHODS: A community-based process evaluation was conducted of a national intervention, developed by the Canadian AIDS Treatment Information Exchange (CATIE), to enhance treatment information provision in CBAOs and encourage its integration with prevention services. Our study involved 13 interviews with intervention participants in 6 CBAOs across Canada, CATIE staff, and funders, as well as a 25-person verification exercise. RESULTS: Intervention participants conceptualized integration as linking front-line HIV treatment, health promotion and prevention services, emphasizing mediation between scientific and lay knowledge, the political context of integration and the role of social determinants in clients' health and access to services. Challenges to integration include high staff turnover and inflexible funding structures. Complex health education related to the relationship between viral load and HIV transmission is a critical area of integrated service delivery. CONCLUSION: Study findings help distinguish a community-based concept of HIV-related integration from alternative uses of the term while pointing out key tensions associated with efforts to integrate HIV prevention and treatment in a community-based context.

Beyond buzzwords: toward a community-based model of the integration of HIV treatment and prevention.

Propelled by increased global access to Highly Active Anti-Retroviral Therapies, the integration of HIV treatment and prevention has emerged as an important organizing concept of pandemic response. Despite its potential significance for community-based AIDS organizations (CBAOs) little research on integration has been done from a community-based perspective. This paper responds to that gap in the literature. With a view to moving what can be an abstract concept to the level of concrete practice, we offer a community-based model of the integration of HIV treatment and prevention. The model is based on research conducted in 2006-2007 with front-line staff from CBAOs across Canada carried out in partnership with the Canadian AIDS Treatment Information Exchange. The model is grounded in three central dimensions of a community-based perspective on integration deriving from our research: the phenomenological primacy of front-line service work, a comprehensive notion of treatment and prevention, and the importance of social context. The model is intended as a conceptual resource that can assist CBAOs in formulating practical responses to new demands for integrated service provision.