guidelines have been specified in pediatric inflammatory bowel disease
(IBD), few IBD centers implement these into standard care. We describe a mixed qualitative and quantitative process of developing a needs-based transition
program for adolescents and young adults with IBD.
We enrolled 29 adolescents with IBD, 8 young adults with IBD in adult care, 14 pediatric gastroenterologists, and 58 adult gastroenterologists to provide input into barriers to successful transition
, essential patient competencies, and key targets of clinical intervention.
The availability and expertise of adult gastroenterologists in childhood-onset IBD were identified by pediatric providers as primary barriers to health care transfer
. A medical summary containing pertinent health information was identified by adult providers as instrumental to assume patient care post transfer
. Young adults with IBD identified self-advocacy, education on insurance basics, and peer mentoring as essential targets of transition
support and preparation in pediatric care. Findings were used to develop educational materials, a portable medical summary, a referral database of adult gastroenterologists, and a young adult clinic geared towards transition
Involving key patient and provider stakeholders in the development of a transition
program is aimed at ensuring that the individual needs of patients and their families are met. Collaboration between pediatric and adult providers is also intended to facilitate a seamless continuum from pediatric to adult health care services. Efforts to evaluate the impact of such programming on self-management in adult care are needed.