ArticleJournal of patient experience2024
"There was No Opportunity to Express Good or Bad": Perspectives From Patient Focus Groups on Patient Experience in Clinical Trials.
Article in Journal of patient experience, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled 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.
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
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- Trial
- Trial
- Perceptions of health research participation in rural and urban Pennsylvanians.Journal of clinical and translational science · 2026Article
- Mapping the path to diversity in clinical trials: a qualitative study of community member and stakeholder perspectives.BMC public health · 2025Article
- Acceptability and Feasibility of Health Measures in Preteens: Findings From the ROLO Longitudinal Birth Cohort Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- How to Support Participants in Urogenital and Prostate Clinical Trials: A Qualitative Perspective.Psycho-oncology · 2025Article
- What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data.Journal of clinical and translational science · 2025Article
- Respectful closure of a CEnR DNA integrity study: A bridge to sustained interactions with research participants.Journal of clinical and translational science · 2025Article
- Re: "There Was No Opportunity to Express Good or Bad": Perspectives from Patient Focus Groups on Patient Experience in Clinical Trials.Journal of patient experience · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
To understand how patients perceive their experiences leading up to, during, and after a clinical trial, and the relationship these experiences had with future willingness to participate, we conducted 3 focus groups with patients who had prior clinical trial involvement (n = 25). Discussion topics included clinical trial discovery, enrollment, communication, trust, patient-centricity, and future enrollment. Patient focus groups revealed a variety of motivations for enrolling in clinical trials (eg, altruism, efficacious treatment, curiosity, desperation, etc.). Patients learned about clinical trials through trusted sources (eg, primary care physicians, patient advocacy groups) and social media. Access and uncertainty about clinical trials were barriers to enrollment. Patient-centric communication and attention given to disease states and symptom severity were valued and made patients feel genuinely cared about. Post-trial follow up and being informed of trial results were inconsistently reported by patients. Critically, patients described frustration with an overall lack of patient experience measurement. Patients identified a need to measure experiences before, during, and after clinical trials and emphasized that doing so would facilitate patient trust and overall experience.
Indexed as
Identifiers
What OpenQuestion holds
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 OpenQuestion graph.