Allison Bihari, BSc1, Nima Hamidi, MD2, Cynthia H. Seow, MBBS (Hons), MSc, FRACP2, Karen J. Goodman, PhD1, Eytan Wine, MD, PhD, FRCPC1, Karen Kroeker, MD, MSc, FRCPC1 1University of Alberta, Edmonton, AB, Canada; 2University of Calgary, Calgary, AB, Canada
Introduction: The incidence of childhood inflammatory bowel disease (IBD) diagnoses is increasing; therefore, more patients will transition from pediatric to adult care. Literature on IBD transition has focused mainly on transition readiness; transition success is often referenced but is rarely defined. The aim of this study is to describe transition success from the perspectives of patients, parents, and health care providers representative of these stakeholders.
Methods: Virtual semi-structured interviews were conducted using interview guides; a separate guide was developed for each group. Interviews were transcribed verbatim and then analyzed concurrently with data collection by latent content analysis. Recruitment for each group in Western Canada continued until thematic saturation was achieved. This study used a naturalistic inquiry approach with methods of qualitative description.
Results: Thematic saturation was achieved with a different number of participants for each group: 17 patients; 15 health care providers; and 13 parents. Among patients, 58.8% were female, median age at diagnosis was 15 (IQR: 3.5), 47% had Crohn’s, 47% reported ulcerative colitis, and one reported both. Among providers, 73.3% were female; 40% were IBD nurses in adult care, 6.7% were IBD nurses in pediatric care, 20% were pediatric gastroenterologists, and 33.3% were adult gastroenterologists. All parents were mothers of children with IBD. One transition success theme was common to all groups: independence in one’s care. characterized by the patient making and attending appointments, and asking questions, and having an awareness of their health. A theme that emerged in both patient and parent groups was the relationship with or trust in the adult care team, characterized predominantly as the patient being comfortable with their new care team. A theme common to provider and parent groups was disease management, characterized by medication adherence and reaching out as needed. Additional themes that emerged within specific groups are outlined in Figure 1.
Discussion: Health care providers, parents, and patients share the view that transition success requires independence in one’s care. Themes specific to one or two stakeholder groups include relationship with or trust in the adult care team, disease management, health outcomes, care stability, care team management, and general knowledge. A definition of transition success that reflects perspectives of all stakeholders can guide providers to help patients achieve success.
Figure: Figure 1. Intersection of themes emerging from interviews with patients, health care providers, and parents of young adults with inflammatory bowel disease.
Allison Bihari, BSc1, Nima Hamidi, MD2, Cynthia H. Seow, MBBS (Hons), MSc, FRACP2, Karen J. Goodman, PhD1, Eytan Wine, MD, PhD, FRCPC1, Karen Kroeker, MD, MSc, FRCPC1. P0554 - Defining Transition Success in Inflammatory Bowel Disease According to Patients, Parents, and Health Care Providers, ACG 2021 Annual Scientific Meeting Abstracts. Las Vegas, Nevada: American College of Gastroenterology.