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

Abstract

To synthesize findings from qualitative studies focusing on adult cancer patients and their experiences and perspectives on clinical trials. 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. 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. 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. 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.