2854 - Patient Experience as Clinical Trial Participants in Radiation Oncology: A Single Institution Survey-Based Study
Presenter(s)
S. Bergholtz1, N. Gutsche2, H. J. Ryu3, J. R. Evans3, J. Rice4, and J. L. Shah3; 1Transitional Year Program, Trinity Health Livonia Hospital, Livonia, MI, 2Department of Radiation Oncology, University of Florida, Gainesville, FL, 3Department of Radiation Oncology, University of Michigan, Ann Arbor, MI, 4Department of Biostatistics, University of Michigan, Ann Arbor, MI
Purpose/Objective(s): Recruitment and retention for clinical trials present persistent challenges, including high participant resource burden and limited participant awareness of trial requirements. Communication about expectations of participants is an important component of enrollment. There is little reported on the nature of this communication and participant experience from patients’ perspectives. We conducted a survey of patients who participated in a clinical trial in 2023 in our department to assess the patient experience of clinical trial participation.
Materials/Methods: We designed a quantitative (Likert scale, 1-5 with 5 being strongly agree) and qualitative (free text) survey to assess participant expectations, team communication, trial logistics, impact on patient finances and time, portal use for trial communication, and attitudes toward participation. Patients were identified from all open trials (6 CNS, 3 H&N, 3 breast, 1 thoracic, 6 GI, and 6 GU trials) within the radiation oncology department at a single institution in 2023. Surveys were distributed via patient portal, phone, and email. Mean and reliability (alpha) scores were calculated for survey domains, and free-text responses were summarized.
Results: Of 307 trial participants identified, 35% completed the survey. Mean scores were high (positive) across all domains (>4.67/5.0), including comprehension of trial logistics and patient portal navigation; the financial and time burden domains scored the lowest with means 3.0/5.0. Alpha scores were high, demonstrating good survey reliability. Most participants learned about the trial from their treating physicians (93%), and 62.5% preferred time to discuss trial options at their initial consultation. Helping others with similar conditions motivated 50% of patients to enroll. The most cited negative aspects of trial participation were survey burden (30%) and lack of clarity of trials within the context of standard treatment options (20%).
Conclusion: Clinical trial participants in this department reported a globally positive experience with trial participation. However, financial and time burden emerged as barriers, alongside survey burden and lack of clarity with treatment options. Selection bias towards patients who are apt to participate in trials should be considered in interpreting these results, particularly regarding trial logistics and patient portal usage. Further work is needed to understand the perspectives of patients who decline to participate. These findings will guide departmental strategies to improve patient recruitment to clinical trials.