Between-visit care represents a substantial and underrecognized component of health care utilization in pediatric inflammatory bowel disease

BACKGROUND: Children with inflammatory bowel disease (IBD) require substantial health care engagement, yet traditional utilization metrics underestimate the scope of care by omitting between-visit clinical activity such as electronic messaging, telephone encounters, and results review. Pediatric-specific data describing this hidden workload remain limited. METHODS: We conducted a retrospective longitudinal cohort study of youth aged 0 to 22 years diagnosed with IBD between 2015 and 2024 at a tertiary care center. Eligible patients had ≥ 6 months of primary care prior to diagnosis and ≥ 6 months of gastroenterological follow-up postdiagnosis. From the shared electronic health record, we quantified outpatient visits, emergency care, and procedures, as well as between-visit care (portal messages from patients, telephone encounters, and clinician-patient review of results) from prediagnosis through long-term follow-up. Events were aggregated into 6-month epochs relative to diagnosis and stratified by disease severity using validated symptom indices. Predictors of between-visit care were evaluated using generalized linear mixed-effects modeling. RESULTS: Among 226 patients (median age 12 years; 57% male), health care utilization increased markedly during peri-diagnostic epochs. Between-visit care rose from a median of 1 event per 6 months > 1 year prediagnosis to 64 events in the year following diagnosis, and the number of these events remained persistently elevated thereafter. Higher disease severity was strongly associated with increased between-visit care. In multivariable analysis, postdiagnosis epochs, moderate-severe disease activity, and later diagnostic year independently predicted increased between-visit care (all P < .0001). CONCLUSIONS: Between-visit care represents a substantial and clinically meaningful component of pediatric IBD management, underscoring the need for workforce planning, reimbursement models, and digital innovations to address this largely invisible clinical workload.