Gaps Exist in the Comprehensive Care of Children with Inflammatory Bowel Diseases

Abstract

To describe patterns of primary and specialty care delivery in pediatric patients with inflammatory bowel diseases (IBD), delineate which members of the healthcare team provided services, and identify gaps in care. Cross-sectional survey of parents of children (2-17years) with IBD and adolescents with IBD (13-17years) at a free-standing, quaternary children's hospital regarding healthcare receipt. There were 161 parents and 84 adolescents who responded to the survey (75% and 60% response, respectively). The mean patient age was 14±3years, 51% were male, 80% had Crohn's disease, 16% ulcerative colitis, and 4% IBD-unspecified. Most parents were white (94%), living in a suburban setting (57%). Sixty-nine percent of households had ≥1 parent with a bachelor's degree or higher. Most had private insurance (43%) or private primary with public secondary insurance (34%). Most patients received annual check-ups (70%), vaccinations (78%), and care for minor illnesses (74%) from their primary care provider. Check-ups for gastrointestinal symptoms, IBD monitoring, and changes in type/dosing of IBD treatment were provided by their gastroenterology provider (77%, 93%, and 86% of patients, respectively). Discussions about family/peer relationships, school/extracurricular activities, and mood were not addressed in 30%-40% of participants. Adolescents frequently reported that no one had talked to them about substance use (40%), sexual health (50%), or body image (60%); 75% of adolescents and 76% of their parents reported that no one had discussed transitioning to an adult provider. There were gaps in the psychosocial care of pediatric patients with IBD. Coordinated, comprehensive care delivery models are needed.