Transition clinics: an observational study of themes important to young people with inflammatory bowel disease

Abstract

Background: Transition from paediatric to adult services can be stressful and potentially disruptive for adolescents diagnosed with inflammatory bowel disease (IBD). This study aimed to ascertain transitionrelated factors relevant to young people in New Zealand. Methods: Adolescents diagnosed with IBD prior to their 16 th birthday were asked to participate in focus groups to generate transition-related themes. These themes were used to develop a questionnaire, which was then administered to a second group of young patients. Results: Initial focus group discussions generated several key themes: these included concerns about meeting new people in unfamiliar surroundings, the importance of shared clinics and assessments for transition readiness. The subsequent transition questionnaire was completed by 53 young people (28 female and 48 with Crohn's disease). The most commonly reported difficulty by those entering transition was meeting a new doctor. This and building a new relationship/trust were the main concerns of respondents who were preparing for or within a transition process. Parental assessment of illness and readiness to transition were not thought to be as important as other factors for determining readiness for transition. The character of their new adult gastroenterologist was the factor felt most likely to make transition easy. Conclusions: The main concerns of these young patients with IBD, at various stages of transition, were about meeting a new team and building new relationships. Planning and conducting a structured transition process should consider these factors to optimise the process.

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

“…We believe that a key difference is the theme of relationship with/ trust in the adult care team, which was common to patients and parents. When interviewed, many participants commented on the close relationship they had with their pediatric team and how they had hoped to develop a similar relationship with the adult team, which echoes the literature on transition in chronic diseases ( 33 , 34 ). Adult care providers who strive to offer successful transition experiences could prioritize getting to know their transitioning patients and striving to make them feel understood.…”

Factors influencing the healthcare transition in Chinese adolescents with inflammatory bowel disease: a multi-perspective qualitative study

“…They can cover various transition-related topics with adolescents, such as IBD knowledge, medical history, medication, tests, independence, self-efficacy in medication management and clinic appointments, lifestyle choices [ 48 , 49 ]. In addition, meeting with a new physician and building trust with healthcare providers are common concerns of patients during this transition [ 50 ].…”

Canadian Consensus Statements on the Transition of Adolescents and Young Adults with Inflammatory Bowel Disease from Pediatric to Adult Care: A Collaborative Initiative Between the Canadian IBD Transition Network and Crohn’s and Colitis Canada

“…While an overlap period between pediatric and adult has not improved transition outcomes, it does allow patients and caregivers the opportunity to voice concerns and make suggestions before the final transfer. In focus groups, patients noted that shared pediatric and adult clinics are helpful in facilitating information transfer and building confidence in the new adult gastroenterologist ( 79 , 80 ). However, the evidence is lacking for shared clinics models and associated improved health outcomes following the transition.…”

“…Interest in AYAs and transition care by the consulting adult gastroenterologist and access to an IBD nurse are considered important to patients ( 79 ). Early transfer referral initiation by the pediatric provider and prioritization of the transitioning AYAs by adult providers can optimize transition care.…”