Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.

The Transition Task Force was developed by a small group of committed ImproveCareNow clinicians and improvers who identified a need to assess the current state of transition and transfer to adult care in ImproveCareNow centers and to improve the process to help make it more seamless for centers, patients, and families. The group has evolved to include patients and parents and has engaged a small number of centers in testing changes that will eventually be spread network-wide.

To begin to understand transition and transfer of care in ImproveCareNow, the team surveyed centers in the network on their use of transition readiness tools. Their work was presented at 2016 Advances in Inflammatory Bowel Diseases (AIBD), Crohn’s & Colitis Foundation of America's Clinical & Research Conference in December.

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Image: (from left to right) Theresa Todd, MPH; Jeanne Tung, MD and Marc Schaefer, MD, MPH, discuss Transition and Transfer survey findings with attendees at AIBD.

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 Image: Implementing Transition of Care and Transfer of Care Systems in Pediatric IBD; AIBD Poster, accepted

The survey represents the first study to assess actual transitioning and transfer practices in pediatric IBD care. The findings support previous studies, which show that successful transition and self-management require a multidisciplinary approach to transition planning that includes behavioral medicine and social work. Key findings include the following: centers with an established IBD clinic that also had a social worker and/or psychologist used a transition checklist more often than centers without these multidisciplinary resources; centers with an IBD clinic were more likely to utilize a formal transfer of care process.

The Transition Task Force is also working on developing a Transfer of Care summary letter form that has been reviewed (with patient and parent input), tested, and is being shared with ImproveCareNow centers; strengthening partnerships with the PAC to develop a Transfer of Care toolkit, and working with CCFA to help review and test transitioning materials (which they are working on through their Pediatric Empowerment campaign).

Members of the Transition Innovation Community include:

Sandy Kim, MD – Children’s Hospital of Pittsburgh

Michele Maddux, PhD – Children’s Mercy - Kansas City

Jeanne Tung, MD – Mayo Clinic

Marc Schaefer, MD, MPH – Penn State Hershey Children’s Hospital

Theresa Todd, MPH – Nicklaus Children’s Hospital

Marc Tsou, MD – Children’s Hospital of The King’s Daughters

Howard Baron, MD – Pediatric Gastroenterology & Nutrition Associates

Sami Kennedy – Former PAC Co-Chair; Medical Student; Patient

 

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