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

doi:10.1097/TXD.0000000000001197

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

Transplant Direct. 2021 Aug 6;7(9):e745. doi: 10.1097/TXD.0000000000001197. eCollection 2021 Sep.

Authors

Sarah E Van Pilsum Rasmussen¹, Shanti Seaman², Morgan A Johnson¹, Karen Vanterpool¹, Diane M Brown², Aaron A R Tobian^{2

3

4}, Timothy Pruett⁵, Varvara Kirchner⁵, Faith E Fletcher⁶, Burke Smith⁷, Sonya Trinh⁸, Dorry L Segev^{1

4}, Christine M Durand², Jeremy Sugarman^{2

9}

Affiliations

¹ Department of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD.
² Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.
³ Department of Pathology, Johns Hopkins University School of Medicine, Baltimore, MD.
⁴ Department of Epidemiology, Johns Hopkins School of Public Health, Baltimore, MD.
⁵ Department 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.
⁸ Department of Medicine, Ochsner Clinic Foundation, New Orleans, LA.
⁹ Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.

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.