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
{"title":"在美国南加州，将艾滋病毒感染者纳入治疗研究的风险和收益","authors":"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","doi":"10.1016/j.jve.2023.100328","DOIUrl":null,"url":null,"abstract":"<div><h3>Introduction</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Discussion</h3><p>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.</p></div>","PeriodicalId":17552,"journal":{"name":"Journal of Virus Eradication","volume":"9 2","pages":"Article 100328"},"PeriodicalIF":3.5000,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/2d/23/main.PMC10334343.pdf","citationCount":"0","resultStr":"{\"title\":\"Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States\",\"authors\":\"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\",\"doi\":\"10.1016/j.jve.2023.100328\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Introduction</h3><p>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.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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.</p></div><div><h3>Discussion</h3><p>Participants perceived minimal personal and societal risks and valued the altruistic benefits of participating in the Last Gift study. 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Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States
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.
期刊介绍：
The Journal of Virus Eradication aims to provide a specialist, open-access forum to publish work in the rapidly developing field of virus eradication. The Journal covers all human viruses, in the context of new therapeutic strategies, as well as societal eradication of viral infections with preventive interventions.
The Journal is aimed at the international community involved in the prevention and management of viral infections. It provides an academic forum for the publication of original research into viral reservoirs, viral persistence and virus eradication and ultimately development of cures.
The Journal not only publishes original research, but provides an opportunity for opinions, reviews, case studies and comments on the published literature. It focusses on evidence-based medicine as the major thrust in the successful management of viral infections.The Journal encompasses virological, immunological, epidemiological, modelling, pharmacological, pre-clinical and in vitro, as well as clinical, data including but not limited to drugs, immunotherapy and gene therapy. It is an important source of information on the development of vaccine programs and preventative measures aimed at virus eradication.
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