Patient-clinician toolkit can ease transition from pediatric to adult IBD care

By Marilynn Larkin

NEW YORK (Reuters Health) - 7/8/2019

A toolkit created by a patient-clinician team can facilitate the transition from pediatric to adult care for adolescents with inflammatory bowel disease (IBD), according to the tool's developers.

"The Transfer Toolkit represents one way to enhance disease education and transfer readiness among adolescents with IBD," coauthor Samantha Kennedy, told Reuters Health by email. Kennedy was diagnosed with IBD at age 14 and felt "lost" when she was transferred to adult care.

As a student at Cooper Medical School of Rowan University in Camden, New Jersey, and co-leader of the Patient Advisory Council (PAC) of the ImproveCareNow Pediatric IBD learning health system (, Kennedy developed the toolkit with Dr. Michele Maddux of Children's Mercy Kansas City to help other teens in transition. PAC members and gastroenterologists also provided input.

"While we designed the toolkit to address the needs of the IBD community, we believe that its use and application is cross-cutting and could be applied broadly to patients and physicians in other disease groups," Kennedy said.

As reported online August 7 in Pediatrics, the project took about a year and resulted in a 10-page color toolkit with six sections:

  • Skills to Gain Before You Go: includes basic knowledge about the IBD and its treatment
  • Considerations When Choosing a New IBD Center: includes questions such as whether the team will meet the teen's needs in a convenient way
  • Self-Advocacy: specific guidance to encourage teens to ask questions at the visit
  • Understanding Insurance: a short primer including health insurance terminology
  • Understanding Your Care: basic standards of care to be aware of and ask about after transferring
  • Transfer Resources to Try: list of web- and mobile-based transfer resources

A review by PAC members found that, on a scale of 1 (very unprepared) to 10 (very prepared), the mean level of preparedness to transfer before reading the toolkit was 5.6, compared to 8.9 afterward. All PAC members said they would recommend the toolkit to other patients.

The majority of gastroenterologists said that each toolkit section was important: Skills to Gain Before You Go (96%), Considerations When Choosing a New IBD Center (84.6%), Self-Advocacy (92.3%), Understanding Insurance (77.8%), Standards of Care (74.1%), Transfer Resources to Try (88.9%), and Patient Narratives (85.2%).

"In isolation, the Transfer Toolkit may not result in substantial change in the transfer success of patients with IBD moving to adult care," Kennedy and Dr. Maddux write in the paper. "Rather, we encourage the toolkit to be considered as 1 piece of a multidimensional care process."

Kennedy added that ImproveCareNow is the "driving force" behind the toolkit and its success, noting that the initiative's "all teach, all learn" philosophy "can be applied to any patient population."

Dr. Laurie Keefer, Co-Director, GRITT-IBD at Icahn School of Medicine at Mount Sinai in New York City, commented by email that she has worked with similar toolkits and found them "very helpful and empowering, at least for a subset of young adult patients, (by) addressing their concerns in language that they understand."

"One of the difficulties our young adult patients face is knowing when/how to assert themselves about their care needs," she told Reuters Health. "Toolkits like this really normalize some of the common experiences and details about what they need to be thinking about."

"The transition to adolescent to adult centered care is important," she added, "but I think toolkits like this are also very useful to the patient who has already transferred from pediatric care, or a young adult who starts their care in an adult setting."

The transfer toolkit is available online at


Pediatrics 2019.

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