Invisible Workload of Caring for Pediatric Patients with Inflammatory Bowel Disease

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Background: “Historically, telephone calls were the primary means of communication between families and clinicians. With the widespread adoption of electronic health records (EHRs) and patient portals, asynchronous digital messaging has become increasingly common. Although these platforms may enhance access and patient engagement, evidence suggests they do not simply replace telephone encounters; instead, they may increase overall communication volume.7 Lower thresholds for initiating messages, the need for iterative clarification, and miscommunication may all contribute to this rise, raising concerns about added workload and potential clinician burnout…Understanding the timing, magnitude, and predictors of between-visit communication is essential to improving care delivery and accurately estimating workforce needs to effectively manage pediatric IBD patients.”

Methods:  From the shared electronic health record, the data from 226 patients (0 to22 years) was quantified. This included 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.

Key findings:

  • Between-visit care rose from a median of 1 event per 6 months at time >1 year prediagnosis to 64 events in the year following diagnosis
  • After the first year following diagnosis, between-visit care was a median of 41 events per year
  • There was a strong, graded relationship between disease severity and health care utilization, with the greatest increases seen in subspecialty visits, emergency care, and between-visit care among patients with moderate to severe symptoms
The number of results review and portal message encounters relative to the time of diagnosis
This chart shows the number of telephone encounters relative to the time of diagnosis
Disease severity affects frequency of messages/phone calls.
But, these interactions are frequent even in asymptomatic patients.

Discussion Points:

  • “Even during periods of relative disease quiescence, patients generated substantial volumes of portal messages, telephone encounters, and result review requirements. These findings underscore that the longitudinal management of pediatric IBD extends far beyond scheduled clinic visits and episodic care.”
  • “This persistent care burden likely reflects the complexity of pediatric IBD management including medication titration, symptom monitoring, laboratory surveillance, comorbidity screening, insurance navigation, school-related concerns, anticipatory guidance, administrative needs, transitional readiness planning, and caregiver and patient education.11 Unlike acute care utilization, which may diminish as disease control improves, the need for ongoing communication and care appears intrinsic to chronic disease management in the pediatric IBD population.”
  • “Despite its clinical importance, between-visit care remains largely invisible in traditional utilization metrics and is frequently unreimbursed. Our findings indicate that this hidden workload is substantial, persistent, and closely tied to disease complexity rather than patient demographic factors.”

The editorial from Kellermeyer notes that this invisible care did not include “the substantial administrative workload associated with prior authorization (PA) for advanced IBD therapeutics, insurance denial management, appeals, and peer-to-peer reviews …[which] are notoriously difficult to capture in electronic health record (her) metadata.”

My take: There is a lot of behind the scenes physician work that is needed to help manage patients with inflammatory bowel disease. I suspect most families do not realize the extent of this work.

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1 thought on “Invisible Workload of Caring for Pediatric Patients with Inflammatory Bowel Disease”

  1. The error here may fall on the physician and staff. The altruistic behavior may be a fault. A much lower threshold should be kept to encourage a follow up visit and often telemedicine can be instituted. It may also alter the patient behavior as well.

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