TY - JOUR
T1 - Patients' Experiences With HIV-positive to HIV-positive Organ Transplantation
AU - Van Pilsum Rasmussen, Sarah E.
AU - Seaman, Shanti
AU - Johnson, Morgan A.
AU - Vanterpool, Karen
AU - Brown, Diane M.
AU - Tobian, Aaron A.R.
AU - Pruett, Timothy
AU - Kirchner, Varvara
AU - Fletcher, Faith E.
AU - Smith, Burke
AU - Trinh, Sonya
AU - Segev, Dorry L.
AU - Durand, Christine M.
AU - Sugarman, Jeremy
N1 - Publisher Copyright:
© 2021 Wolters Kluwer Health. All rights reserved.
PY - 2021/8/6
Y1 - 2021/8/6
N2 - 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.
AB - 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.
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U2 - 10.1097/TXD.0000000000001197
DO - 10.1097/TXD.0000000000001197
M3 - Article
C2 - 34386582
AN - SCOPUS:85115660335
SN - 2373-8731
VL - 7
SP - E745
JO - Transplantation Direct
JF - Transplantation Direct
IS - 9
ER -