Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective

Background The aim of this study was to determine the proportion of patients’ caregivers willing to participate in clinical research and examine the possible barriers against recruitment to clinical research in children with inflammatory bowel disease. Methods In a cross-sectional study, caregivers and children with inflammatory bowel disease were surveyed via a questionnaire that addressed parents’ willingness to participate in clinical studies and factors influencing their willingness to participate. Results A total of 118 caregivers to children with inflammatory bowel disease [median age 14.5, IQR: 12.0–15.8 years, 60 boys, 61 (52%) with Crohn’s disease] who were followed for a median duration of 1.73 years (IQR 0.4–3.6 years) completed the survey. One hundred and four (88.2%) caregivers answered “Definitely” or “Probably” to participate in clinical research while 14 (11.8%) were “Neutral” or “Probably” unwilling to participate (P<0.001). Patients were less likely to participate in clinical research if they had longer disease duration (P = 0.019), or were in clinical relapse (P = 0.03). Parents’ education, income, age of children at diagnosis, money incentive, disease relapse and medications at the time of the survey did not have any significant effect on willingness to participate. Conclusions The majority of children with inflammatory bowel disease and their caregivers are willing to participate in clinical research.