Patient communication and experiences in cancer clinical drug trials: a mixed-method study at a specialist clinical trials unit

Forbes Shepherd, R; Bradford, A; Lieschke, M; Shackleton, K; Hyatt, A

Author(s): Forbes Shepherd, R; Bradford, A; Lieschke, M; Shackleton, K; Hyatt, A;
Details: Publication Year 2023-06-13,Volume 24,Issue #1,Page 400
Journal Title: Trials
Publication Type: Research article
Abstract: BACKGROUND: As cancer therapies increase in their complexity, effective communication among patients, physicians, and research staff is critical for optimal clinical trial management. Currently, we understand little about on-trial communication practices and patient trial experiences over time. This mixed-method study explored patient experiences of participating in a clinical drug trial at different time points, focussing on patient communication with trial staff. METHODS: Patients enrolled in clinical drug trials conducted at the Parkville Cancer Clinical Trials Unit were invited to complete a tailored online survey and/or a qualitative interview. Patients were recruited to three cohorts based on time since the first trial treatment: new (>/= 1 to </= 13 weeks), mid- (>/= 14 to </= 26 weeks), and long-term (>/= 52 weeks) trial patients. Descriptive statistics were calculated for survey responses. Interview data were analysed thematically with a team-based approach. Survey and interview data were integrated at the intepretation stage. RESULTS: From May to June 2021, 210 patients completed a survey (response rate 64%, 60% male), 20 completed interviews (60% male), and 18 completed both. More long-term trial patients (46%) participated than new (29%) and mid-trial patients (26%). Survey data showed high (> 90%) patient satisfaction with the provision of trial information and communication with trial staff across trial stages, and many reported trial experiences as above and beyond standard care. Interview data indicated that written trial information could be overwhelming, and verbal communication with the staff and physicians was highly valued, especially for enrolment and side effect management among long-term patients. Patients described the key points along the clinical trial trajectory that merit close attention: clear and well-communicated randomisation practices, reliable pathways for side effect reporting and prompt response from the trial staff, and end-of-trial transition management to avoid a sense of abandonment. CONCLUSION: Patients reported high overall satisfaction with trial management but outlined key pinch points requiring improved communication practices. Establishing a range of effective communication practices among trial staff and physicians with patients in cancer clinical trials may have a wide range of positive effects on patient accrual, retention, and satisfaction.
Publisher: BioMed Central
Keywords: Humans; Male; Female; Communication; *Neoplasms/drug therapy; *Drug-Related Side Effects and Adverse Reactions; Patient Satisfaction; Patients; Cancer clinical trials; Mixed-method; Patient experience
Department(s): Health Services Research; Parkville Cancer Clinical Trials Unit
PubMed ID: 37312206
Publisher's Version: https://doi.org/10.1186/s13063-023-07284-2
Open Access at Publisher's Site: https://doi.org/10.1186/s13063-023-07284-2
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2023-09-14 03:09:13

Last Modified: 2023-09-14 03:09:44