TY - JOUR AU - Seaman, Shanti AU - Brown, Diane AU - Eno, Ann AU - Yu, Sile AU - Massie, Allan B. AU - Tobian, Aaron A. R. AU - Durand, Christine M. AU - Segev, Dorry L. AU - Wu, Albert W. AU - Sugarman, Jeremy PY - 2021 DA - 2021/03/18 TI - Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS) JO - Journal of Patient-Reported Outcomes SP - 28 VL - 5 IS - 1 AB - 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. SN - 2509-8020 UR - https://doi.org/10.1186/s41687-021-00297-y DO - 10.1186/s41687-021-00297-y ID - Seaman2021 ER -