An Individualized and Multi-faceted Transition Intervention is Needed for Pediatric Patients with Inflammatory Bowel Disease

The transition of chronically ill patients from pediatric to adult care can be challenging for patients and families and there is no gold standard for how to facilitate this process. An unsuccessful transition has been associated with more negative health outcomes. It is generally agreed upon by researchers in the field that a successful transition should foster knowledge of the patient’s disease, as well as skills such as self-advocacy and self-management in relation to health and medication knowledge. Current research is aimed at elucidating the best transition process or intervention to avoid negative health outcomes that have been observed with unstructured transition, or to improve patient scores on assessments that measure skills believed to contribute to prevention of these outcomes. Inflammatory bowel disease (IBD) is one illness for which young adults must transition to an adult gastroenterologist before turning 18. While checklists, guidelines and recommendations have been synthesized using expert opinion, limited research addresses the opinions and transition experiences of young adults with IBD. Development of an effective transition intervention requires: assessing the current transition experience (seeking ideas for what could be improved upon), determining preferred intervention content and format, and assessment of young adult IBD patients with respect to skills required for successful transition. This first phase of a larger transition improvement project was designed to collect and analyze this essential information, in order to inform the design of an intervention. A mixed-methods design was used for this study, which employed semi-structured interviews and validated quantitative assessments of self-management/self-advocacy, medication adherence and IBD knowledge. The participant group was composed of 20 young adults (ages 17-20 years) with IBD, who had transitioned from pediatric care at the Edmonton Pediatric IBD Clinic (EPIC) to adult care at the Zeidler Gastrointestinal Health Centre, both University of Alberta clinics. Interviews were analyzed thematically, using the qualitative method of interpretive description. Scores on assessments were compared to published reference data by estimating proportion or mean differences and 95% confidence intervals. Even though transition was discussed using fairly positive commentary by this group of participants, the concept of a transition intervention was well-received by study participants. Preferred content centered on medications, disease and what to expect during transition. Preferred ways to learn were one-on-one instruction, handouts and websites. Themes identified from the interviews, which were key for guiding intervention development, were: “individualized and multi-faceted,” “teach about transition” and “support the shift in responsibility.” Quantitative assessments showed that among participants, 5.0% achieved 90% mastery of transition skills (0.64% lower [95% CI: -10.7%, 9.4%] than the reference estimate), 35% had poor medication adherence (17% [95% confidence interval (CI): -39%, 6%] lower than the reference estimate) and the mean knowledge score was 15.15 (3.86 [95% CI: 2.27, 5.45] points higher than the reference estimate). This study identified preferred intervention formats and content as well as skill areas to target for improvement. It was novel in its consideration of the current transition experience from the patient perspective, as well as their recommendations for an intervention. The results of this study led the researchers to design an interactive website, which delivers a customized experience and can be implemented at clinics across Canada.

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