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A Patient-Centered Medical Home for Pediatric Inflammatory Bowel Disease

A Patient-Centered Medical Home for Pediatric Inflammatory Bowel Disease 1024 683 Mary Bates, PhD

The Center for Pediatric and Adolescent IBD serves as a case study for comprehensive, multidisciplinary care.

In a new paper published in Inflammatory Bowel Disease, researchers from Nationwide Children’s describe the multidisciplinary care model at the Center for Pediatric and Adolescent Inflammatory Bowel Disease as an example of a pediatric specialty medical home. The researchers identify the components of the program that enable them to deliver more comprehensive care from diagnosis through transfer to adult care efficiently and effectively.

Care for patients with inflammatory bowel disease (IBD) can be complex and costly. The patient-centered medical home, which was developed in the primary care setting, was recently applied successfully to the adult IBD population. Though children and young adults with IBD have equally complex care needs, they also have additional challenges not faced by adults, including growth, physical and psychosocial development, and transition of care from pediatric to adult providers.

Using the infrastructure of the Center for Pediatric and Adolescent IBD at Nationwide Children’s as a case study, the authors describe how a patient-centered medical home can lead to successful outcomes for children and adolescents with IBD. Some of the essential elements of the care delivery model include:

  • A multidisciplinary team of providers, each with specific roles and responsibilities. The team includes physician and nurse experts in IBD, psychologists, social workers, dieticians, clinical pharmacists, data specialists and research coordinators.
  • An initial teaching visit. Following diagnosis, patients and families meet with their IBD team for initial assessments, as well as to cover educational materials and expectations.
  • Annual multidisciplinary visits. In addition to routine follow-ups with their primary gastroenterologist, patients have the opportunity to meet with the multidisciplinary IBD team once a year until eventual transfer to adult care.
  • Young Adult Transition Program. A curriculum is started around age 12 that targets the knowledge, skills and tools that pediatric patients need to master in order to provide self-care and be independent as they transition to adult care.
  • Parent mentors. Parents of IBD patients serve multiple roles in the IBD Center, including as peer mentors to other parents through the Connecting Families program.
  • Data tracking and research. Patients are entered into a registry that captures demographic and clinical data at every encounter. This standardized data is used to inform quality improvement projects and measure clinical outcomes against goals.
  • Regular team meetings. The multidisciplinary team meets weekly to discuss care delivery issues and research projects.

“We describe our pediatric IBD medical home as patient-centered,” says Hilary Michel, MD, a pediatric gastroenterologist at Nationwide Children’s and one of the paper’s authors. “That means one of our goals is to incorporate patients and families at every step whenever possible.”

Dr. Michel and her co-authors recognize that Nationwide Children’s is fortunate to have the resources necessary to deliver such high-quality IBD care but hope that other centers will consider incorporating some aspects of their model.

“In an ideal world, every pediatric IBD patient would have access to this type of comprehensive, multidisciplinary care,” says Jennifer Dotson, MD, MPH, co-director of the Center for Pediatric and Adolescent IBD and a co-author of the paper.

“We hope our model can serve as a guide and that other centers can apply different aspects of interventions that we have developed or refined to improve care for pediatric IBD patients on a larger scale.”

 

References:

Michel HK, Boyle B, David J, Donegan A, Drobnic B, Kren C, Maltz RM, McKillop HN, McNicol M, Oates M, and Dotson JL. The Pediatric Inflammatory Bowel Disease Medical Home: A Proposed Model. Inflammatory Bowel Disease. 2021 Sep 25:izab238. Doi: 10.1093/ibd/izab238.

About the author

Mary a freelance science writer and blogger based in Boston. Her favorite topics include biology, psychology, neuroscience, ecology, and animal behavior. She has a BA in Biology-Psychology with a minor in English from Skidmore College in Saratoga Springs, NY, and a PhD from Brown University, where she researched bat echolocation and bullfrog chorusing.

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