Patients' Experiences with HIV-positive to HIV-positive Organ Transplantation

Sarah E. Van Pilsum Rasmussen, Shanti Seaman, Morgan A. Johnson, Karen Vanterpool, Diane M. Brown, Aaron A.R. Tobian, Timothy Pruett, Varvara Kirchner, Faith E. Fletcher, Burke Smith, Sonya Trinh, Dorry L. Segev, Christine M. Durand, Jeremy Sugarman

Research output: Contribution to journalArticlepeer-review

Abstract

Background. HIV+donor (HIV D+) to HIV+recipient (HIV R+) transplantation involves ethical considerations related to safety, consent, stigma, and privacy, which could be better understood through studying patients' actual experiences. Methods. We interviewed kidney and liver transplant recipients enrolled in clinical trials evaluating HIV D+/R+transplantation at 4 centers regarding their decision-making process, the informed consent process, and posttransplant experiences. Participants were interviewed at-transplant (≤3 wk after transplant), posttransplant (≥3 mo after transplant), or both time points. Interviews were analyzed thematically using constant comparison of inductive and deductive coding. Results. We conducted 35 interviews with 22 recipients (15 at-transplant; 20 posttransplant; 13 both time points; 85% participation). Participants accepted HIV D+organs because of perceived benefits and situational factors that increased their confidence in the trials and outweighed perceived clinical and social risks. Participants reported positive experiences with the consent process and the trial. Some described HIV-related stigma and emphasized the need for privacy; others believed HIV D+/R+transplantation could help combat such stigma. There were some indications of possible therapeutic misestimation (overestimation of benefits or underestimation of risks of a study). Some participants believed that HIV+transplant candidates were unable to receive HIV-noninfected donor organs. Conclusions. Despite overall positive experiences, some ethical concerns remain that should be mitigated going forward. For instance, based on our findings, targeted education for HIV+transplant candidates regarding available treatment options and for transplant teams regarding privacy and stigma concerns would be beneficial.

Original languageEnglish (US)
JournalTransplantation Direct
Volume7
Issue number9
DOIs
StatePublished - Sep 2021

Bibliographical note

Funding Information:
Received 14 May 2021. Accepted 4 June 2021. 1Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD. 2Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD. 3Department of Pathology, Johns Hopkins University School of Medicine, Baltimore, MD. 4Department of Epidemiology, Johns Hopkins School of Public Health, Baltimore, MD. 5Department of Surgery, University of Minnesota, Minneapolis, MN. 6 Department of Health Behavior, University of Alabama at Birmingham School of Public Health, Birmingham, AL. 7 Department of Surgery, University of Alabama at Birmingham, Birmingham, AL. 8Department of Medicine, Ochsner Clinic Foundation, New Orleans, LA. 9Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD. This work was supported by The Greenwall Foundation (Making a Difference Grant), the National Institute of Allergy and Infectious Diseases (1R01AI120938, U01AI138897, and U01AI134591) and the National Institute of Diabetes and Digestive and Kidney Diseases (K24DK101828). The analyses described here are the responsibility of the authors alone and do not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. This research was performed as a project within the HOPE in ACTION clinical trial network, a collaborative clinical research project funded by the National Institute of Allergy and Infectious Diseases.

Publisher Copyright:
© 2021 Wolters Kluwer Health. All rights reserved.

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