What influences people’s decision to participate in clinical trials? A qualitative interview study with patients and parents of patients diagnosed with primary membranoproliferative glomerulonephritis (MPGN)

Primary membranoproliferative glomerulonephritis (MPGN) is a group of ultra rare kidney disorders associated with complement activation. MPGN often appears in young age and isincurable. Current treatments have varying efficiency and new clinical trials are underway to identify better and more tailored treatment pathways. We conducted semi-structured digital interviews with an international sample of MPGN patients and parents of MPGN patients to understand how they would make any potential decision to participate in future clinical trials. Six main factors influenced the decision-making process: the trial design and practical aspects, personal motivation, concerns about participation, expert advice, current state of illness, and family situation. More specifically, patients and parents considered important that participation in clinical trials is compatible with work and family life and that the expected side effects are limited. They would be motivated by the prospect of maintaining or improving their kidney function or if their current condition was poor. Providing comprehensive information about the risks and benefits of participation, co-designing trials in partnership with patients and limiting the burdens associated with participation may positively impact recruitment and adherence rates.