ArticleJournal of empirical research on human research ethics : JERHRE2026
A 360 Degree Qualitative Ethical Assessment of Reporting Patient Reported Outcomes.
Article in Journal of empirical research on human research ethics : JERHRE, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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.
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.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
While guidelines exist for returning genetic, biomarker, and radiologic research results, there is little guidance regarding the return of patient-reported outcome (PRO) research results. As a supplement to an ongoing trial of palliative care for Parkinson's disease, we conducted thirty qualitative, semi-structured interviews of persons with Parkinson's disease, their carepartners, community neurologists, primary care physicians, and researchers to elicit their perceptions of returning PRO research data to persons with Parkinson's disease and carepartners. Interviews were audio-taped, transcribed, double-coded, and analyzed for themes. Participants supported returning tailored PRO research results when feasible. Clinicians wanted clinically-actionable results. Researchers thought that returning aggregate results should be standard practice. However, our persons with Parkinson's disease and carepartners reported privacy concerns. Clinicians had mixed reactions about receiving non-actionable research results. Researchers worried whether returning individual results during a study could impact research integrity. Additional research is needed to develop optimal guidelines for future research studies.
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Registered trials
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 Socratic graph.