Brief Report: Willingness to Accept HIV-Infected and Increased Infectious Risk Donor Organs Among Transplant Candidates Living With HIV

Seaman, Shanti; Rasmussen, Sarah E. Van Pilsum; Nguyen, Anh Q.; Halpern, Samantha E.; You, Susan; Waldram, Madeleine M.; Anjum, Saad; Bowring, Mary G.; Muzaale, Abimereki D.; Ostrander, Darin; Brown, Diane; Massie, Allan B.; Tobian, Aaron A.R.; Henderson, Macey L.; Fletcher, Faith E.; Smith, Burke; Chao, Ada; Gorupati, Nishita; Prakash, Katya; Aslam, Saima; Lee, Dong Hoon; Kirchner, Varvara A.; Pruett, Timothy L.; Haidar, Ghady; Hughes, Kailey; Malinis, Maricar; Trinh, Sonya; Segev, Dorry L.; Sugarman, Jeremy; Durand, Christine M.

doi:10.1097/qai.0000000000002405

Cited by 13 publications

(16 citation statements)

References 26 publications

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“… 16 , 30 Likewise, a national survey of HIV + transplant candidates found that 84% would be willing to accept an HIV + deceased donor organ, 88% believed that they would receive an HIV D + organ faster than a D – organ, and 69% believed that HIV D + /R + transplantation was safe for the recipient. 31 …”

Section: Discussionmentioning

confidence: 99%

“…Likewise, participant responses in these interviews were consistent with surveys conducted with candidates before transplantation. 31 Second, these interviews are also subject to participation bias, as recipients with better clinical experiences may have been more likely to participate than those recipients with more posttransplant complications. Nevertheless, the response rate was good and there were no qualitatively different demographic or posttransplant clinical characteristics among participants and nonparticipants (ie, age, sex, race, length of transplant hospitalization, delayed graft function, and graft loss).…”

Section: Discussionmentioning

confidence: 99%

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

Rasmussen

Seaman

Johnson

et al. 2021

Transplantation Direct

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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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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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

Rasmussen

Seaman

Johnson

et al. 2021

Transplantation Direct

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“…PROMETHEUS was developed as part of a larger multidisciplinary project aimed at understanding the ethical, legal and social issues associated with HIV D+/R+ transplantation. The larger project includes in-depth interviews with recipients of HIV D+/R+ transplants, potential HIV+ living donors [ 21 ] and independent recipient advocates [ 22 ] as well as a quantitative survey of transplant candidates living with HIV on the organ transplant waitlist regarding their willingness to accept HIV D+/R+ transplants [ 23 ].…”

Section: Methodsmentioning

confidence: 99%

Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)

Seaman

Brown

Eno

et al. 2021

J Patient Rep Outcomes

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Background Transplantation of HIV-positive (HIV+) donor organs for HIV+ recipients (HIV D+/R+) is now being performed as research in the United States, but raises ethical concerns. While patient-reported outcome measures are increasingly used to evaluate clinical interventions, there is no published measure to aptly capture patients’ experiences in the unique context of experimental HIV D+/R+ transplantation. Therefore, we developed PROMETHEUS (patient-reported measure of experimental transplants with HIV and ethics in the United States). To do so, we created a conceptual framework, drafted a pilot battery using existing and new measures related to this context, and refined it based on cognitive and pilot testing. PROMETHEUS was administered 6-months post-transplant in a clinical trial evaluating these transplants. We analyzed data from the first 20 patient-participants for reliability and validity by calculating Cronbach’s alpha and reviewing item performance characteristics. Results PROMETHEUS 1.0 consisted of 29 items with 5 putative subscales: Emotions; Trust; Decision Making; Transplant; and Decision Satisfaction. Overall, responses were positive. Cronbach’s alpha was > 0.8 for all subscales except Transplant, which was 0.38. Two Transplant subscale items were removed due to poor reliability and construct validity. Conclusions We developed PROMETHEUS to systematically capture patient-reported experiences with this novel experimental transplantation program, nested it in an actual clinical trial, and obtained preliminary data regarding its performance.

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“…We developed the survey instrument based on other published surveys that specifically addressed donor‐derived infections in organ transplant recipients 22‐25 . The survey was tested internally and modified prior to patient administration.…”

Section: Methodsmentioning

confidence: 99%

“…We developed the survey instrument based on other published surveys that specifically addressed donor-derived infections in organ transplant recipients. [22][23][24][25] The survey was tested internally and modified prior to patient administration. The survey was built, and all responses were directly recorded into REDCap, a secure web application for building and managing online surveys and databases.…”

Section: Backg Rou N Dmentioning

confidence: 99%

Post‐transplant survey to assess patient experiences with donor‐derived HCV infection

Prakash

Ramirez‐Sanchez

Ramirez

et al. 2020

Transplant Infectious Dis

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Background: Despite increased utilization of hepatitis C virus-infected (HCV+) organs for transplantation into HCV-uninfected recipients, there is lack of standardization in HCV-related patient education/consent and limited data on financial and social impact on patients. Methods: We conducted a survey on patients with donor-derived HCV infection at our center transplanted between 4/1/2017 and 11/1/2019 to assess: why patients chose to accept HCV+ organ(s), the adequacy of their pre-transplant HCV education and informed consent process, financial issues related to copays after discharge, and social challenges they faced. Results: Among 49 patients surveyed, transplanted organs included heart (n = 19), lung (n = 9), kidney (n = 11), liver (n = 4), heart/kidney (n = 4), and liver/kidney (n = 2). Many recipients accepted an HCV-viremic (HCV-V) organ due to perceived reduction in waitlist time (n = 33) and/or trust in their physician's recommendation (n = 29). Almost all (n = 47) felt that pre-transplant education and consent was appropriate. Thirty patients had no copay for direct-acting antivirals (DAA) for HCV, including 21 with household income <$20 000; seven had copays of <$100 and one had a copay >$1000. Two patients reported feeling isolated due to HCV infection and eight reported higher than anticipated medication costs. Patients' biggest concern was potential HCV transmission to partners (n = 18) and family/friends (n = 15). Overall almost all (n = 47) patients reported a positive experience with HCV-V organ transplantation. Conclusion: We demonstrate that real-world patient experiences surrounding HCV-V organ transplantation have been favorable. Almost all patients report comprehensive HCV-related pre-transplant consent and education. Additionally, medication costs and social isolation/exclusion were not barriers to the use of these organs.

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Brief Report: Willingness to Accept HIV-Infected and Increased Infectious Risk Donor Organs Among Transplant Candidates Living With HIV

Cited by 13 publications

References 26 publications

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

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

Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)

Post‐transplant survey to assess patient experiences with donor‐derived HCV infection

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