Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model

Abstract

Background: Children with inflammatory bowel diseases (IBDs) require primary and gastrointestinal (GI) care, but little is known about patient and family preferences for care receipt. We aimed to understand caregiver perceptions of current healthcare quality, describe barriers to receiving healthcare, and elicit caregiver and adolescent preferences for how comprehensive care ideally would be delivered. Methods: This was an anonymous survey of caregivers of 2- to 17-year olds with IBD and adolescents with IBD aged 13–17 years at a large, free-standing children’s hospital. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for optimal care delivery. Results: Two hundred and seventeen caregivers and 140 adolescents were recruited, 214 caregivers and 133 adolescents consented/assented, and 160 caregivers and 84 adolescents completed the survey (75% and 60% response rate, respectively). Mean patient age was 14 years (SD = 3); 51% male; 79% Crohn’s disease, 16% ulcerative colitis, and 4% indeterminate colitis. Caregivers were primarily female (86%), Caucasian (94%), and living in a 2-caregiver household (79%). Most caregivers reported that their child’s primary care physician (PCP) and GI doctor oversaw their primary care (71%) and their IBD care (94%), respectively. Caregivers were satisfied with communication with their PCP and GI providers (>90%) but did not know how well they communicated with one another (54%). Barriers to primary and GI care varied, and few caregivers (6%) reported unmet healthcare needs. Caregivers and adolescents saw PCPs and GI doctors having important roles in comprehensive care, though specific preferences for care delivery differed. Conclusion: Caregivers and adolescent perspectives are essential to developing family-centered care models for children with IBD. Lay Summary This study presents caregiver perceptions of care quality and delivery for pediatric patients with inflammatory bowel diseases, assesses care gaps and barriers to care, and elicits preferences for ideal comprehensive care delivery from caregivers and adolescents.