The journey of patients in cancer clinical trials: A qualitative meta-synthesis on experiences and perspectives

Objective: To synthesize findings from qualitative studies focusing on adult cancer patients and their experiences and perspectives on clinical trials. Methods: A meta-synthesis was conducted on the literature retrieved from Scopus, Embase, PubMed, and PsycInfo databases. Patient quotes from papers were coded line-by-line using Nvivo software, and themes were created. Results: 45 papers were included. Three large themes were identified based on the timeline of trials: (1) “pre-trial participation” includes sub-themes regarding informational needs, experience with the decision, and representations. (2) “Ongoing trial” includes subthemes covering supportive care, practical and psycho-physical burdens, identity and comparison with others, and the importance of maintaining hope. (3) “Post-trial,” with subthemes covering comprehension of results and attitudes towards data sharing, perception of being left unattended, and hindsight and regretful thoughts. Conclusion: This work emphasizes the importance of contextualizing patient experiences and holistically viewing trials. Additionally, this review stresses that patient narratives in the post-trial period are underrepresented in the literature. Practice implications: Further research should prioritize the post-trial stage to enhance patients' psychological well-being and address concerns such as regret to reduce trial dropout rates. Emphasizing patient connections, providing clear trial-related information, and offering remote participation options, particularly for rural patients, are crucial steps in improving patient experience and trial adherence.