PATIENT PERSPECTIVES AND EXPERIENCES IN CANCER CLINICAL TRIALS
Introduction: Understanding cancer patients’ psychosocial experiences with clinical trials is essential for improving patient-centered care and trial participation. This doctoral research includes four studies exploring these experiences using diverse methodologies. Methods: The first study applied meta-synthesis to 45 papers on adult cancer patients’ trial experiences, using NVivo for coding and theme generation. The second analyzed sentiment in 241 Reddit posts from patients and caregivers discussing trials, using R Studio and the NRC Emotion Lexicon. The third involved thematic analysis of focus groups and interviews with 30 breast cancer patients in a longitudinal study. The fourth study designed a longitudinal survey at the European Institute of Oncology to identify psychosocial predictors of decision regret in early-phase trial participants. Results: The meta-synthesis revealed three key themes: pre-trial informational needs, ongoing trial burdens, and post-trial reflections. Sentiment analysis showed prevalent fear and sadness alongside positive emotions. Thematic analysis emphasized effective communication and nurse-patient relationships as facilitators, while reminders and lack of feedback were barriers. Preliminary findings from the longitudinal study suggest predictors of decision regret include mismatched roles, side effects, and strained patient-doctor relationships. Conclusion: This research highlights the complexity of cancer patients’ trial experiences and the need for holistic strategies addressing psychosocial needs. Improved communication, personalized support, and emotional burden management are critical for enhancing retention and outcomes. Future research should explore underrepresented post-trial experiences and interventions to strengthen patient-doctor relationships and align expectations with trial realities.
clinical trial, patient experience, decision making
Networked Digital Library of Theses and Dissertations