People with HIV at the end-of-life and their next-of-kin/loved ones are willing to participate in interventional HIV cure-related research.
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Ndukwe, Samuel O, et al. People with Hiv At the End-of-life and Their Next-of-kin/loved Ones Are Willing to Participate In Interventional Hiv Cure-related Research. 2024.APA
Ndukwe, S., Patel, H., Shelton, B., Concha Garcia, S., Dullano, C., Solso, S., Hendrickx, S., Riggs, P., Villa, T., Kaytes, A., Taylor, J., Little, S., Lessard, D., Arora, A., Costiniuk, C., Eskaf, S., Smith, D., Gianella, S., & Dubé, K. (2024). People with HIV at the end-of-life and their next-of-kin/loved ones are willing to participate in interventional HIV cure-related research.Chicago
Ndukwe, Samuel O, Hursch Patel, Brittany Shelton, Susanna Concha Garcia, Cheryl Dullano, Stephanie Solso, Steven Hendrickx et al. 2024. People with Hiv At the End-Of-Life and Their Next-Of-Kin/loved Ones Are Willing to Participate In Interventional Hiv Cure-Related Research.- Creator
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Ndukwe, Samuel O
- Gillings School of Global Public Health
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Patel, Hursch
- Gillings School of Global Public Health
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Shelton, Brittany
- Other Affiliation: Department of Public Health, College of Education, Health and Human Sciences, University of Tennessee Knoxville, TN.
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Concha-Garcia, Susanna
- Other Affiliation: AntiViral Research Center (AVRC).
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Dullano, Cheryl
- Other Affiliation: AntiViral Research Center (AVRC).
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Solso, Stephanie
- Other Affiliation: AntiViral Research Center (AVRC).
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Hendrickx, Steven
- Other Affiliation: AntiViral Research Center (AVRC).
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Riggs, Patricia K
- Other Affiliation: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD), CA.
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Villa, Thomas J
- Other Affiliation: HIV Obstruction by Programmed Epigenetics (HOPE) Collaboratory Community Advisory Board, Rockville, MD.
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Kaytes, Andy
- Other Affiliation: UCSD AntiViral Research Center Community Advisory Board, San Diego.
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Taylor, Jeff
- Other Affiliation: UCSD AntiViral Research Center Community Advisory Board, San Diego.
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Little, Susan J
- Other Affiliation: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD), CA.
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Lessard, David
- Other Affiliation: Division of Infectious Diseases and Chronic Viral Illness Service, Department of Medicine, Division of Infectious Diseases, McGill University Health Center (MUCH).
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Arora, Anish K
- Other Affiliation: Canadian Institutes of Health Research Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials.
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Costiniuk, Cecilia T
- Other Affiliation: Division of Infectious Diseases and Chronic Viral Illness Service, Department of Medicine, Division of Infectious Diseases, McGill University Health Center (MUCH).
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Eskaf, Shadi
- Other Affiliation: Public Health Research Consultant, Chapel Hill, NC, USA.
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Smith, Davey M
- Other Affiliation: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD), CA.
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Gianella, Sara
- Other Affiliation: Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego (UCSD), CA.
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Dubé, Karine
- Gillings School of Global Public Health
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Ndukwe, Samuel O
- Abstract
The Last Gift study at the University of California San Diego (UCSD), United States enrolls terminally ill people with HIV (PWH) in HIV cure research.From 2017 to 2022, we conducted surveys with Last Gift participants and their next-of-kin/loved ones to evaluate willingness to participate in different types of HIV cure research at the end of life (EOL). We analyzed willingness data descriptively.We surveyed 17 Last Gift participants and 17 next-of-kin/loved ones. More than half of Last Gift participants ( n = 10; 58.8%) expressed willingness to participate in studies involving totally new treatments or approaches ('first-in-human' studies), a combination of different approaches, the use of unique antibodies, proteins or molecules, or therapeutic vaccines. Under one-quarter of Last Gift participants ( n = 4; 23.5%) expressed willingness to participate in research involving interventions that may shorten their life expectancy to benefit medical research. Most Last Gift participants and their next-of-kin/loved ones also expressed high acceptance for various types of donations and biopsies at the EOL (e.g. hair donations and skin, lymph node or gut biopsies).Knowing whether people would be willing to participate in different types of EOL HIV cure research can help inform the design of future innovative studies. As a research community, we have a duty to design studies with adequate safeguards to preserve the public trust in research and honor PWH's important gift to humanity.
- Date of publication
- 2024
- Identifier
- PMID: 37861674
- PMCID: PMC10842373
- DOI: https://dx.doi.org/10.1097/QAD.0000000000003754
- Resource type
- Article
- Rights statement
- In Copyright
- Journal title
- AIDS
- Journal volume
- 38
- Journal issue
- 2
- Page start
- 235
- Page end
- 243
- Version
- Postprint
- Funder
- NIAID NIH HHS
- NIMH NIH HHS
- ISSN
- 1473-5571
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- Parents:
This work has no parents.
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