"There was No Opportunity to Express Good or Bad": Perspectives From Patient Focus Groups on Patient Experience in Clinical Trials.
| Autor: | Boyd P; Press Ganey Associates, LLC, South Bend, IN, USA.; Current affiliation: Department of Population Sciences, City of Hope, Duarte, CA, USA., Sternke EA; Press Ganey Associates, LLC, South Bend, IN, USA., Tite DJ; Press Ganey Associates, LLC, South Bend, IN, USA., Morgan K; Press Ganey Associates, LLC, South Bend, IN, USA. |
|---|---|
| Jazyk: | angličtina |
| Zdroj: | Journal of patient experience [J Patient Exp] 2024 Mar 13; Vol. 11, pp. 23743735241237684. Date of Electronic Publication: 2024 Mar 13 (Print Publication: 2024). |
| DOI: | 10.1177/23743735241237684 |
| Abstrakt: | 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. Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. (© The Author(s) 2024.) |
| Databáze: | MEDLINE |
| Externí odkaz: |
|