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

Jeannie S Huang; Laura E Bauman; David Katibian; David Brent Polk

doi:10.1093/ibd/izag097

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

Inflamm Bowel Dis. 2026 Jun 11:izag097. doi: 10.1093/ibd/izag097. Online ahead of print.

Authors

Jeannie S Huang^{1

2

3}, Laura E Bauman^{1

3}, David Katibian^{1

3}, David Brent Polk^{1

3}

Affiliations

¹ Divisions of Gastroenterology, Hepatology, and Nutrition, Rady Children's Hospital, San Diego, CA 92123, United States.
² Clinical Informatics, Rady Children's Hospital, San Diego, CA 92123, United States.
³ Department of Pediatrics, University of California San Diego, La Jolla, CA 92093, United States.

PMID: 42275175
DOI: 10.1093/ibd/izag097

Abstract

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.

Keywords: electronic health record; health care utilization; inflammatory bowel disease; patient portal.