Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States

Karine Dubé; Brittany Shelton; Hursch Patel; Samuel O. Ndukwe; Susanna Concha-Garcia; Cheryl Dullano; Stephanie Solso; Steven Hendrickx; Andy Kaytes; Jeff Taylor; Thomas J. Villa; Susan J. Little; Patricia K. Riggs; David Lessard; Anish K. Arora; Cecilia T. Costiniuk; Shadi Eskaf; Davey M. Smith; Sara Gianella

Journal of Virus Eradication (Jun 2023)

Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States

Karine Dubé,
Brittany Shelton,
Hursch Patel,
Samuel O. Ndukwe,
Susanna Concha-Garcia,
Cheryl Dullano,
Stephanie Solso,
Steven Hendrickx,
Andy Kaytes,
Jeff Taylor,
Thomas J. Villa,
Susan J. Little,
Patricia K. Riggs,
David Lessard,
Anish K. Arora,
Cecilia T. Costiniuk,
Shadi Eskaf,
Davey M. Smith,
Sara Gianella

Affiliations

Karine Dubé: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; UNC Gillings School of Global Public Health, Chapel Hill, NC, USA; Corresponding author. Division of Infectious Diseases and Global Public Health (IDGPH), School of Medicine (SOM), University of California San Diego (UCSD), 9500 Gilman Drive, MC, 0507, La Jolla, CA, 92093, USA.
Brittany Shelton: Department of Public Health, College of Education, Health and Human Sciences, University of Tennessee Knoxville, TN, USA
Hursch Patel: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; UNC Gillings School of Global Public Health, Chapel Hill, NC, USA
Samuel O. Ndukwe: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; UNC Gillings School of Global Public Health, Chapel Hill, NC, USA
Susanna Concha-Garcia: AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA; HIV Neurobehavioral Research Center, University of California San Diego, San Diego, CA, USA
Cheryl Dullano: AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA
Stephanie Solso: AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA
Steven Hendrickx: AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA
Andy Kaytes: AntiViral Research Center Community Advisory Board, San Diego, CA, USA
Jeff Taylor: AntiViral Research Center Community Advisory Board, San Diego, CA, USA; HIV+Aging Research Project-Palm Springs (HARP-PS), Palm Springs, CA, USA
Thomas J. Villa: Reversing Immune Dysfunction (RID) Martin Delaney Collaboratory for HIV Cure Research Community Advisory Board, Rockville, MD, USA
Susan J. Little: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA
Patricia K. Riggs: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA
David Lessard: Division of Infectious Diseases and Chronic Viral Illness Service, Department of Medicine, McGill University Health Center (MUCH), Montreal, QC, Canada; Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials, Montreal, QC, Canada; Center for Outcome Research and Evaluation, Research Institute of the McGill University Health Center, Montreal, QC, Canada
Anish K. Arora: Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials, Montreal, QC, Canada; Center for Outcome Research and Evaluation, Research Institute of the McGill University Health Center, Montreal, QC, Canada; Department of Family Medicine, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada
Cecilia T. Costiniuk: Division of Infectious Diseases and Chronic Viral Illness Service, Department of Medicine, McGill University Health Center (MUCH), Montreal, QC, Canada; Department of Microbiology and Immunology, McGill University, Montreal, QC, Canada; Division of Experimental Medicine, Department of Medicine, McGill University Health Centre, Montreal, QC, Canada; Infectious Diseases and Immunity in Global Health Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada
Shadi Eskaf: Public Health Research Consultant, Chapel Hill, NC, USA
Davey M. Smith: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA
Sara Gianella: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, CA, USA; AntiViral Research Center (AVRC), University of California San Diego, San Diego, CA, USA

Journal volume & issue: Vol. 9, no. 2
p. 100328

Abstract

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Introduction: Although current antiretroviral therapy allows most people with HIV (PWH) to experience normal longevity with a good quality of life, an HIV cure remains elusive due to HIV reservoir formation within deep tissues. An HIV cure remains highly desirable to the community of PWH. This study reports on the perceived risks and benefits of participation in the Last Gift study, a study aimed at characterizing HIV reservoirs via post-mortem autopsy, among PWH at the end of life (EOL) and their next-of-kin (NOK)/loved ones. Methods: Last Gift participants (PWH with a terminal illness and/or near the end of life) and their NOK/loved ones were surveyed for perceptions of risks, benefits, and meaning for participation in the Last Gift study. Results: The average age of the 17 Last Gift participants was 66.6 years, 3 were females, 1 person identified as Hispanic, and 15 as Caucasian. The average age of the 17 NOK/loved ones was 56.7 years, and relationships to Last Gift participants included partner/spouse, sibling, friend, child, parent, grandparent, and nephew. The only perceived personal risk of the Last Gift among participants was the blood draws (3/17). NOK/loved ones perceived the following risks: blood draws (2/17), physical pain (3/17), worry that something bad will happen (2/17), and unpleasant side effects (1/17). Participants in Last Gift and NOK/loved ones indicated the study had various positive social effects. For both participants and NOK/loved ones, the most frequent perceived personal benefit of the Last Gift was the satisfaction of supporting HIV cure research. Discussion: Participants perceived minimal personal and societal risks and valued the altruistic benefits of participating in the Last Gift study. Last Gift participants and NOK/loved ones were cautious about possible personal risks of EOL HIV cure research but still viewed that the emotional, psychological and societal benefits of participation outweighed potential risks.

Published in Journal of Virus Eradication

ISSN: 2055-6640 (Print); 2055-6659 (Online)
Publisher: Elsevier
Country of publisher: United Kingdom
LCC subjects: Science: Microbiology; Medicine: Public aspects of medicine
Website: https://www.journals.elsevier.com/journal-of-virus-eradication

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