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Barriers to clinical research in children with inflammatory bowel disease: The patients' perspective
Wael El-Matary1, Vini Deora1, Kanika Grover1
1Section of Pediatric Gastroenterology, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada.
Insights
Most caregivers of children with inflammatory bowel disease (IBD) are willing to join clinical research. Factors like longer disease duration or active relapse may decrease participation willingness in these pediatric IBD patients.
Area of Science:
- Pediatric Gastroenterology
- Clinical Research
- Patient Recruitment
Background:
- Inflammatory bowel disease (IBD) affects children, necessitating clinical research for treatment advancements.
- Caregiver willingness is crucial for recruiting pediatric patients into clinical studies.
- Understanding barriers to recruitment is vital for improving pediatric IBD research participation.
Purpose of the Study:
- To determine the proportion of caregivers willing to participate in clinical research for children with IBD.
- To identify factors influencing caregiver and patient willingness to enroll in pediatric IBD clinical studies.
Main Methods:
- A cross-sectional survey was administered to caregivers of children with IBD.
- Questionnaires assessed caregiver willingness to participate in clinical research.
- Data were analyzed to identify factors associated with participation willingness.
Main Results:
- 88.2% of caregivers expressed willingness to participate in clinical research.
- Willingness to participate was lower in patients with longer disease duration (P=0.019) and active relapse (P=0.03).
- Parental education, income, age at diagnosis, incentives, and current medications did not significantly impact willingness.
Conclusions:
- The majority of caregivers for children with IBD are willing to participate in clinical research.
- Disease duration and active relapse are key factors influencing participation in pediatric IBD clinical trials.
- Strategies to address these factors may enhance recruitment for pediatric IBD research.
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.
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