Evidence map›Paper›PMID 33738660›Full record

ArticleJournal of patient-reported outcomes2021

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

Shanti Seaman, Diane Brown, Ann Eno, Sile Yu, Allan B Massie, Aaron A R Tobian, Christine M Durand, Dorry L Segev, Albert W Wu, Jeremy Sugarman

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient-reported outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Shanti SeamanDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Diane BrownDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Ann EnoDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Sile YuDepartment of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Allan B MassieDepartment of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Aaron A R TobianDepartment of Epidemiology, Johns Hopkins School of Public Health, Baltimore, MD, USA.
Christine M DurandDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Dorry L SegevDepartment of Surgery, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Albert W WuDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Jeremy SugarmanDepartment of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA. jsugarman@jhu.edu.ORCID http://orcid.org/0000-0001-7022-8332

Funding

Vaccine Response and Immunotherapeutics SWGP30AI094189 · NIAID · JOHNS HOPKINS UNIVERSITY · PI Richard E. Chaisson · 2012 to 2026
$67.0M
HOPE in Action: A Clinical Trial of HIV-to-HIV Liver TransplantationU01AI138897 · NIAID · JOHNS HOPKINS UNIVERSITY · PI Christine Marie Durand, DORRY L. SEGEV · 2018 to 2026
$25.5M
HOPE in Action: A clinical trial of HIV-to-HIV deceased donor kidney transplantationU01AI134591 · NIAID · JOHNS HOPKINS UNIVERSITY · PI DURAND, CHRISTINE MARIE, SEGEV, DORRY L. · 2017 to 2021
$11.0M
Unlocking the Potential of HIV-Infected Deceased Donors for Organ TransplantationR01AI120938 · NIAID · JOHNS HOPKINS UNIVERSITY · PI TOBIAN, AARON A · 2016 to 2021
$4.3M
Patient Oriented Research in Solid Organ TransplantationK24AI144954 · NIAID · NEW YORK UNIVERSITY SCHOOL OF MEDICINE · PI SEGEV, DORRY L. · 2020 to 2024
$956k
Patient Oriented Research in Kidney Disease and Transplant SurgeryK24DK101828 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI SEGEV, DORRY L. · 2014 to 2018
$922k
Optimal Antiretroviral Therapy During Bone Marrow Transplant in HIV-1 InfectionK23CA177321 · NCI · JOHNS HOPKINS UNIVERSITY · PI DURAND, CHRISTINE MARIE · 2014 to 2018
$808k
Determinants of chronic kidney disease in African-American live kidney donorsK01DK101677 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI MASSIE, ALLAN B · 2015 to 2019
$789k
NCI NIH HHS K23 CA177321NCI NIH HHS K23CA177321NIAID NIH HHS K24 AI144954NIAID NIH HHS P30 AI094189NIAID NIH HHS R01 AI120938NIAID NIH HHS U01 AI134591NIAID NIH HHS U01 AI138897NIDDK NIH HHS K01 DK101677NIDDK NIH HHS K01DK101677NIDDK NIH HHS K24 DK101828NIDDK NIH HHS K24DK101828
6 · The paper itself

Abstract

backgroundTransplantation 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.

resultsPROMETHEUS 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.

conclusionsWe 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.

Indexed as

Acquired immunodeficiency syndromeCare deliveryEthicsOrgan procurement and transplantationPatient-reported experiencesPatient safetyQuality of care

Identifiers

PMID33738660
PMCPMC7973329

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.