Objectives: The transition of inflammatory bowel disease (IBD) patients from pediatric to adult care can be challenging. Developing an effective transition intervention requires assessing the current transition experience for potential improvements, determining preferred content and format, and assessing patients' transition skills.
Methods: This mixed-methods study of 20 transitioned IBD patients (ages 17-20 years) used semistructured interviews and validated assessments of self-management/self-advocacy and IBD knowledge. Interviews were analyzed thematically. Assessment scores were compared with published reference data by estimating proportion or mean differences and 95% confidence intervals (CIs).
Results: The concept of a transition intervention was well-received by participants. Preferred content centered on medications, disease and what to expect. Preferred ways to acquire knowledge were one-on-one instruction, handouts, and websites. Identified themes were "individualized and multifaceted," "teach about transition," and "support the shift in responsibility." Among participants, 95% did not achieve 90% mastery of transition skills (0.6% higher [95% CI -10.7% to 9.5%] than the reference estimate) and the mean knowledge score was 15.15 (3.86 [95% CI 2.27 to 5.45] points higher than the reference estimate).
Conclusions: We have identified preferred intervention formats and content as well as skill areas to target for improvement. As a result of this work, we will design a website intervention pertaining to identified themes.