Defining Transition Success for Young Adults with Inflammatory Bowel Disease According to Patients, Parents and Health Care Providers

Abstract

Background The transition from pediatric to adult care is associated with changes centered around the patient taking responsibility for their health. As the incidence of childhood-onset inflammatory bowel disease (IBD) is increasing, it is important to address gaps in transition literature—specifically, the indicators signifying achievement of transition success. The study objective was to define transition success according to patients, parents, and health care providers involved in IBD transition. Methods This study used the method of qualitative description to conduct semi-structured interviews with patients, parents, and health care providers. During interviews, demographic information was collected, and interviews were recorded and transcribed. Data analysis was conducted independently of each group using latent content analysis. Participant recruitment continued until thematic saturation was reached within each group. Results Patients, parents, and health care providers all defined transition success with the theme of independence in one’s care. The theme of disease management emerged within parent and provider groups, whereas 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 groups. Conclusion This study demonstrated differences between how patients, parents, and health care providers view transition success. This finding reveals the value of using a multifaceted definition of transition success with input from all stakeholders. Further research should prioritize the identification of factors common to patients who do not reach transition success as defined by patients, their parents, and providers.

Perspectives of patients, parents, and health care providers on facilitators of and barriers to the transition from pediatric to adult care in inflammatory bowel disease: a qualitative descriptive study

“…Participant demographics have been outlined. 15 In brief, 58.8% of patients were female sex, 52.9% had Crohn’s disease, and 58.8% were diagnosed between the ages of 15 and 17. Further, 29.4% of patients were on biologic medications; 17.6% were on either 5-ASA or an immunosuppressant; 41.1% were on a combination biologic; 5.9% were not on any medication.…”

“…The current analysis is part of a study for which the primary author (A.B) conducted interviews with the primary aim of defining IBD transition success from the perspective of patients, parents, and providers. 15 This analysis used a qualitative descriptive approach to provide a rich account of the phenomenon of transition from pediatric to adult care. 16 , 17 This approach allowed the authors to address the additional research question: “What are the facilitators of and barriers to achieving a successful transition according to patients, parents, and health care providers?”.…”

“…Details of participant recruitment are published. 15 We included patients if they transferred to adult care within the preceding two years and had a known diagnosed of IBD for at least a year before transfer. Providers were included if they had at least one year of experience caring for IBD patients.…”

The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations—Children and Adolescents with IBD

“…There is no standard of care for transitioning adolescents with IBD in Canada and success of transition is defined differently by individuals, parents, and healthcare providers ( 76 ). However, Crohn’s and Colitis Canada recently partnered with the Canadian IBD Transition Network to produce expert consensus statements on best-practices for transitioning AYAs with IBD ( 77 ).…”