ArticleClinical transplantation2019
Early experiences of independent advocates for potential HIV+ recipients of HIV+ donor organ transplants.
Article in Clinical transplantation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed.
- Overcoming barriers and stigma: new frontiers in solid organ transplantation for people with HIV.Clinical microbiology reviews · 2024Review
- Patients' Experiences With HIV-positive to HIV-positive Organ Transplantation.Transplantation direct · 2021Article
- Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS).Journal of patient-reported outcomes · 2021Article
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
backgroundHIV+ to HIV+ solid organ transplants in the United States are now legally permitted. Currently, these transplants must adhere to the HIV Organ Policy Equity (HOPE) Act Safeguards and Research Criteria that require the provision of an independent recipient advocate, a novel requirement for solid organ transplant programs. The objective of this study was to understand the experiences of the first advocates serving in this role.
methodsWe conducted semi-structured interviews with 15 HOPE independent recipient advocates (HIRAs) from 12 institutions.
resultsAll HIRAs had a professional degree and experience in transplantation or infectious diseases. HIRAs' encounters with potential recipients varied in length, modality, and timing. The newness of the role and the lack of guidance were associated with unease among some HIRAs. Some questioned whether their role was redundant to others involved in transplantation and research since some potential recipients experienced informational fatigue.
conclusionsHOPE independent recipient advocates are ensuring the voluntariness of potential participants' decision to accept an HIV-infected organ. Many suggested additional guidance would be helpful and alleviate unease. Concerns about potential role redundancy raise the question of whether the HIRA requirement may be inadvertently increasing burden for potential recipients. Future work that captures the experiences of potential recipients is warranted.
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