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The Characterization and Assessment of Transition Success in Young Adults with Inflammatory Bowel Disease
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- Author / Creator
- Bihari, Allison KJ
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Canada has one of the highest incidence rates of inflammatory bowel disease (IBD) worldwide, particularly among adolescents and young adults. As the incidence of pediatric-onset IBD is projected to increase in the upcoming years, more patients will need to transition from pediatric to adult care. The process of transition is a challenging period, overlapping with the life period of emerging adulthood, where patients gradually assume more responsibility, make independent decisions, and become financially independent. This period of transition has been associated with an increase in health care utilization, and nonadherence to medical appointments and medications. While the literature supports the importance of preparing patients for transition and the need for structured transition programs, there remains a gap in understanding transition outcomes from the perspectives of all partners involved in the transition process. This thesis aims to address this gap, with the overall goal of improving the transition process for young adults with IBD.
A qualitative descriptive approach was used, involving semi-structured interviews with transitioned patients, their parents, and health care providers to define transition success. Data analysis was done using latent content analysis to develop themes that partners used to characterize a successful transition from pediatric to adult care. Themes of these indicators of transition success provided the foundation for a cross-sectional study using a self-administered online questionnaire to assess whether young adults aged 18-25 with pediatric-onset IBD have achieved these indicators of transition success. The questionnaire was also administered to young adults aged 18-25 with adult-onset IBD to explore the role of age period of IBD onset in achievement of transition outcomes. The transition success indicators identified in the qualitative study were subsequently referred to as health care autonomy indicators to account for participants with adult-onset IBD not having undergone transition. Descriptive statistics, including proportions, means and medians, were calculated for each health care autonomy indicator within each IBD onset group (pediatric-onset and adult-onset).
Seventeen patients, 13 parents, and 15 providers from Alberta, Canada, participated in semi-structured interviews, with additional providers recruited from British Columbia. The theme of independence in one's care emerged across all partner groups. The theme of disease management emerged within parent and provider groups, while the theme of relationship with/ trust in adult care team was common to patients and parents. Additional themes of care team management, general knowledge, care stability, and health outcomes emerged within specific partner groups. In the cross-sectional study (n=56), 37 participants with pediatric-onset IBD and 19 with adult-onset IBD completed the questionnaire. Among participants with pediatric-onset IBD, 46.0% had scores suggestive of high independence in their IBD care, 51.4% reported a score categorized as high satisfaction with their relationship with the IBD care team, and 84.2% achieved a score that corresponded to high medication adherence. When compared to participants with pediatric-onset IBD, participants in the adult-onset group (n=19) scored higher on IBD knowledge (mean scores: 11.8 vs. 10.5), had slightly greater independence in their IBD care (mean scores: 52 vs. 46), a higher proportion of participants with high medication adherence (84.2% vs. 93.8%), and had a similar reported satisfaction with their IBD care team (mean scores: 37.4 vs. 37.5).
The findings suggest that while many young adults with pediatric-onset IBD achieve key health care autonomy indicators, there remains areas of improvement. Young adults with pediatric-onset IBD exhibit comparable or lower indicator achievement when compared to those with adult-onset IBD, underscoring the need for supportive interventions for all young adults with IBD. -
- Graduation date
- Fall 2024
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- Type of Item
- Thesis
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- Degree
- Doctor of Philosophy
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- License
- This thesis is made available by the University of Alberta Library with permission of the copyright owner solely for non-commercial purposes. This thesis, or any portion thereof, may not otherwise be copied or reproduced without the written consent of the copyright owner, except to the extent permitted by Canadian copyright law.