“There is nothing better than participating in this study”: Living the PAPAartis trial.
Qualitative research to understand patients' decision-making process during their participation in the PAPAartis clinical trial is an important objective of PAPAartis, alongside the evaluation of the MISACE procedure in preventing spinal cord injury. Our qualitative research is spearheaded by Nuria Romo-Aviles and David Epstein at the University of Granada, who along with colleagues have just published their first paper on their findings.
The researchers interviewed 16 patients participating in the trial about their experiences during their involvement in the project. Feedback was sought on different aspects of patient's decision making and experience including their expectations on choosing to participate in the trial; their concept of the risk-benefit balance regarding the treatment; the impact of the illness and treatment on their family life; and the impact of COVID-19 on their recovery.
The results of this work are very important to understand the social factors which can amplify either distress or healing for patients within a clinical trial, so distress can be reduced, and healing promoted in future trials.