ArticleInflammatory bowel diseases2026
Between-visit care represents a substantial and underrecognized component of health care utilization in pediatric inflammatory bowel disease.
Article in Inflammatory bowel diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundChildren 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.
methodsWe 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.
resultsAmong 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).
conclusionsBetween-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.
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