Trio of Papers On Pediatric IBD Focuses on Gaps In Care, Patterns and Locations of Care, and Patient Perspectives

November 4, 2020

July and September saw a trio of new papers1-3 on inflammatory bowel disease (IBD) in pediatric patients from researchers in the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at UPMC Children's Hospital of Pittsburgh.

Former UPMC Children’s fellow Hilary K. Michel, MD, and nationally recognized IBD expert Sandra C. Kim, MD, director of the Inflammatory Bowel Disease Center at UPMC Children’s teamed up on the studies with Robert B. Noll, PhD, professor of pediatrics, psychiatry, and psychology at the University of Pittsburgh School of Medicine, and Nalyn Siripong, PhD, from the University of Pittsburgh Clinical and Translational Science Institute.

Broadly, the three papers deal with gaps in the comprehensive care of pediatric IBD patients and their caregivers; patterns of care for IBD patients across the spectrum of care settings (e.g., primary care, ED visits); and direct patient and caregiver perspectives and perceptions on what constitutes quality care and what is the ideal model of comprehensive care for IBD patients. The latter study is the first of its kind to examine and catalog direct patient and caregiver perspectives on the subject.

Data for each study was derived from cross-sectional surveys that included two cohorts: parents of children aged 2-17 with IBD and adolescents with IBD between the ages of 13-17.

Searching for Gaps in Care

The first study, published in the Journal of Pediatrics in September, examined patient and parent perspectives on patterns of care delivered by primary care and specialty (GI) providers and what, if any, gaps exist in care.

While the vast majority of respondents to the surveys indicated that basics of care such as annual wellness visits and vaccinations were attended to by their regular primary care physicians (PCP), and GI specific follow-up care for IBD symptom management, IBD monitoring, or potential adjustments to IBD medication therapies were handled by their attending gastroenterologist, significant portions of each study cohort identified areas of care that were not addressed routinely by any of their providers.

Discussions about the patient's mood, interpersonal relationships with family members and friends, and activities or possible school difficulties appear to be lacking. Between 30% and 40% of study participants indicated that these discussions were absent from their health care providers' interactions.

For older adolescents, discussions and care around issues related to substance use or abuse, sexual health, or how their body image has been affected by their diagnosis and treatment are lacking.

A full three-quarters of adolescents and parents of adolescents indicated a total lack of discussion or planning with their health care providers about how their care would eventually transition to an adult gastroenterology provider as they grew older. 

“While our study has limitations, there does appear to be a lack of coordinated care and discussions related to patient health outside of their IBD condition. While their basic physical health and IBD-specific care needs are being met by their PCP and GI providers, there is a real perception that vital discussions that could uncover more serious psychosocial effects or behavioral health conditions are missing. Knowing how important transitions of care are to ensure continuity of health, the fact that 75% of survey respondents indicated that their providers did not conduct discussions around transitions in care means there is much more we can do to construct a timelier and more uniform process for transitioning care,” says Dr. Kim.

Patterns of Care and The Importance of Patient and Caregiver Perspectives in Developing Comprehensive Care Models

Two additional studies from Michel et al. on related IBD topics were published in July and September. The first, in the Journal of Pediatric Gastroenterology and Nutrition2, examined patterns of care and utilization across various health care settings by pediatric IBD patients. The second study, published in Crohn’s & Colitis 360, examined patient and caregiver perspectives on what constitutes ideal and quality care for pediatric IBD patients, and what barriers exist to receiving this kind of comprehensive care.

Findings from the paper on care patterns included a greater-than-expected use of the emergency department (ED) and urgent care (UC) locations by survey respondents. Some of the factors or differentiators between respondents that contributed to higher ED or urgent care utilization include caregiver's education level, geographic distance from GI specialist, and those who had more frequent PCP visits. Higher levels of ED or UC usage, the authors surmise, may ultimately contribute to worse outcomes because the fragmentary nature of this care can lead to disjointed communications between providers in various settings and disparate health care systems.

In the Crohn’s & Colitis 360 paper, Michel et al. provide their findings from a first-of-its-kind study examining patient and caregiver preferences for the type of care they receive as IBD patients. The study sought to collect direct perspectives from patients and caregivers on what they consider to be ideal care for their condition, who should provide which aspects of that care (e.g., between primary care providers and GI specialists), and what barriers may exist that can prevent receiving ideal, high-quality care for their IBD. 

“I think there several important takeaways from these studies. We need to engage with our patients and their caregivers much more directly to help shape the nature of our care models. That may sound intuitive, but it has been somewhat overlooked to this point. We also should understand that our patients likely have many more concerns on their minds beyond their IBD condition proper. Psychosocial and behavioral health issues can have a tremendous impact on one's overall health and quality of life. As GI providers, the key is keeping this top of mind and becoming more proactive in screening for and addressing these potential concerns with patients,” says Dr. Kim.


1. Michel HK, Kim SC, Siripong N, Noll RB. Gaps Exist in the Comprehensive Care of Children With Inflammatory Bowel Disease. J Pediatr. 2020 Sep; 224: 94-101.

2. Michel HK, Noll RB, Siripong N, Kim SC. Patterns of Primary, Specialty, Urgent Care, and Emergency Department Care in Children With Inflammatory Bowel Diseases. J Pediatr Gastroenterol Nutr. 2020 Jul; 71(1): e28-e34. Epub ahead of print.

3. Michel HK, Siripong N, Noll RB, Kim SC. Caregiver and Adolescent Patient Perspectives on Comprehensive Care for Inflammatory Bowel Diseases: Building a Family-Centered Care Delivery Model. Crohn’s & Colitis 360. 2020; 2(3): Otaa055. Epub ahead of print.