Patients' Experiences With HIV-positive to HIV-positive Organ Transplantation. Issue 9 (September 2021)

• Record Type: Journal Article
• Authors: Van Pilsum Rasmussen, Sarah E.; Seaman, Shanti; Johnson, Morgan A.; Vanterpool, Karen; Brown, Diane M.; Tobian, Aaron A.R.; Pruett, Timothy; Kirchner, Varvara; Fletcher, Faith E.; Smith, Burke; Trinh, Sonya; Segev, Dorry L.; Durand, Christine M.; Sugarman, Jeremy
• Is Part Of: Transplantation direct. Volume 7:Issue 9(2021)
• Publication Date: 2021-09
• Subjects: Transplantation of organs, tissues, etc -- Periodicals; Transplantation -- Periodicals; 362.19795
• DOI: 10.1097/TXD.0000000000001197
• Languages: English
• ISSNs: 2373-8731

Abstract

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.