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Between-visit care represents a substantial and underrecognized component of health care utilization in pediatric
Jeannie S Huang1,2,3, Laura E Bauman1,3, David Katibian1,3
1Divisions of Gastroenterology, Hepatology, and Nutrition, Rady Children's Hospital, San Diego, CA 92123, United States.
Insights
Between-visit care in pediatric inflammatory bowel disease (IBD) is substantial, rising significantly after diagnosis. This hidden workload, linked to disease severity, needs recognition in healthcare planning.
Area of Science:
- Pediatric Gastroenterology
- Health Services Research
- Clinical Informatics
Background:
- Pediatric inflammatory bowel disease (IBD) management involves significant patient engagement beyond traditional outpatient visits.
- Existing healthcare utilization metrics often overlook crucial between-visit clinical activities, such as electronic messaging and results review.
- There is a limited understanding of the scope and impact of this 'hidden workload' in pediatric IBD care.
Purpose of the Study:
- To quantify the extent of between-visit care in pediatric IBD patients.
- To analyze the relationship between disease severity and between-visit care utilization.
- To highlight the need for updated models to account for comprehensive IBD management.
Main Methods:
- Retrospective longitudinal cohort study of 226 pediatric IBD patients (aged 0-22 years) from 2015-2024.
- Quantified outpatient visits, emergency care, procedures, and between-visit care (portal messages, phone calls, results review) from EHR data.
- Analyzed care in 6-month epochs relative to diagnosis, stratified by disease severity, using generalized linear mixed-effects modeling.
Main Results:
- Between-visit care increased dramatically from 1 event/6 months prediagnosis to 64 events/year post-diagnosis.
- This elevated level of between-visit care persisted long-term.
- Higher disease severity, postdiagnosis epochs, and moderate-to-severe activity strongly predicted increased between-visit care (P < .0001).
Conclusions:
- Between-visit care is a substantial and clinically significant aspect of pediatric IBD management.
- This hidden workload necessitates consideration in healthcare workforce planning, reimbursement strategies, and digital health solutions.
- Accurate metrics are essential to capture the full scope of care provided to children with IBD.
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.
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