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

Trials

Research

Ashleigh Bradford¹  Rowan Forbes Shepherd¹  Amelia Hyatt²  Kylie Shackleton³  Marian Lieschke³ 

[1] Department of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, 305 Grattan Street, 3000, Melbourne, VIC, Australia;Department of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, 305 Grattan Street, 3000, Melbourne, VIC, Australia;Sir Peter MacCallum Department of Oncology, The University of Melbourne, 3010, Victoria, Australia;Parkville Cancer Clinical Trials Unit, Peter MacCallum Cancer Centre, 3000, Melbourne, VIC, Australia;

关键词: Cancer clinical trials;    Communication;    Patient experience;    Mixed-method;   

DOI  :  10.1186/s13063-023-07284-2

 received in 2022-09-30, accepted in 2023-03-29,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundAs 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.MethodsPatients 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.ResultsFrom 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.ConclusionPatients 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.

【 授权许可】

CC BY   
© The Author(s) 2023

【 图 表 】

41116_2023_37_Article_IEq28.gif