Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)
| Autor: | Allan B. Massie, Jeremy Sugarman, Albert W. Wu, Sile Yu, Dorry L. Segev, Aaron A.R. Tobian, Diane M. Brown, Christine M. Durand, Shanti Seaman, Ann K. Eno |
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| Rok vydání: | 2021 |
| Předmět: |
genetic structures
Psychological intervention Health Informatics Context (language use) 030230 surgery behavioral disciplines and activities 03 medical and health sciences Patient safety 0302 clinical medicine Health Information Management Cronbach's alpha Care delivery 030212 general & internal medicine Ethics Research lcsh:Public aspects of medicine Quality of care Construct validity lcsh:RA1-1270 Cognition Acquired immunodeficiency syndrome Clinical trial Transplantation Organ procurement and transplantation nervous system Patient-reported experiences Psychology psychological phenomena and processes Clinical psychology |
| Zdroj: | Journal of Patient-Reported Outcomes, Vol 5, Iss 1, Pp 1-16 (2021) Journal of Patient-Reported Outcomes |
| ISSN: | 2509-8020 |
| DOI: | 10.1186/s41687-021-00297-y |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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