Abstract
Background
The incidence of childhood-onset inflammatory bowel disease (IBD) diagnoses is increasing in Canada; therefore, more patients will need to transition from pediatric into adult care. The literature on transition in IBD patients has focused mainly on preparation and while transition success is often referenced, it is not clearly defined. Prior research on IBD transition success has only focused on the perspectives of the health care providers. Taking into consideration that transition is a process that greatly relies on patient involvement, patient perspectives should be represented in defining its success.
Aims
The primary aim is to understand patients’ perspectives on the outcomes that characterize a successful transition from pediatric to adult care.
Methods
This study paired a theoretical position of naturalistic inquiry with the method of qualitative description. Purposive sampling was used to recruit patients from IBD clinics at the University of Alberta and the University of Calgary. Inclusion criteria included transition within the last two years, diagnoses with IBD for at least a year prior to transitioning, and absence of comorbidities. Virtual semi-structured interviews were conducted using an established interview guide. Interviews were transcribed verbatim and then analyzed concurrently with data collection by latent content analysis using NVivo computer software. Participant recruitment and data analysis continued until no further themes emerged from the data, which signaled that thematic saturation was achieved.
Results
Thematic saturation was achieved after 17 interviews. Among participants, 58.8% were female; 47% had a diagnosis of Crohn’s, 47% of ulcerative colitis, and one individual was diagnosed with both. The median age at diagnosis was 15 years (IQR, 3.5). The majority (94%) of participants viewed their transition as being successful. Overall, the major themes that emerged from the data were: 1. relationship with one’s adult care team, characterized predominantly as the patient being comfortable with their new team; 2. health outcomes, characterized by disease remaining stable, and medication adherence; 3. independence in one’s care, characterized by making and attending appointments on their own, asking questions and in general having an awareness about your health and disease; 4. care stability, characterized by no drop off in care, and regular contact and follow up by their provider.
Conclusions
Young adults with IBD define pediatric transition success in four themes: relationship with care team, health outcomes, independence in one’s care, and care stability. Through understanding what transition success looks like from the patients’ perspectives, health care providers can help patients achieve success as they define it.
Funding Agencies
None
Mindfulness-Based Cognitive Therapy Experiences in Youth With Inflammatory Bowel Disease and Depression: Protocol for a Mixed Methods Qualitative Study (Preprint)
