Creation of Experience-based Celiac Benchmarks: The First Step in Pretransition Self-management Assessment

Area of Science:

• Pediatric Gastroenterology
• Chronic Disease Management
• Patient Self-Management

Background:

• Transition planning for pediatric chronic diseases emphasizes independence in self-management.
• Diet-dependent conditions like celiac disease (CD) require specific skills not covered by traditional transition tools.
• Existing literature lacks age-appropriate benchmarks for celiac disease self-management skills.

Purpose of the Study:

• To establish age-appropriate benchmarks for celiac disease self-management skills.
• To develop a patient-centered list of celiac-related tasks for assessing transition readiness.
• To inform anticipatory guidance for healthcare providers and families managing pediatric celiac disease.

Main Methods:

• Celiac disease experts developed a comprehensive list of celiac-related self-management tasks.
• Patients with CD and their parents were recruited from clinics and support groups.
• Participants reported the age at which specific celiac-related tasks were mastered.

Main Results:

• 204 patients and 155 parents participated; mean patient age was 12 years.
• Early skills (recognizing gluten-free, safe eating) mastered by age 8.
• Advanced skills (restaurant inquiries, travel safety) mastered between ages 14-16.
• Patient and parent reports showed no significant differences.

Conclusions:

• A novel, patient-centered celiac skill list was developed.
• These benchmarks can improve anticipatory guidance for pediatric celiac disease.
• The findings aim to accelerate the development of self-management skills for improved patient independence.