Perspectives on transfer and transition care of adolescents with inflammatory bowel disease (IBD) from paediatric to adult care: a survey of paediatric and adult gastroenterologists in Australia and New Zealand

Abstract

Background: Basic principles guiding transfer and transition of adolescents with chronic diseases from paediatric to adult care have been established. However, transfer and transition programs specific to the needs of adolescents with IBD have not yet been formulated. Aims: We aimed to identify the barriers to effective transition and explore the perceived needs of adolescents with IBD among paediatric and adult gastroenterologists in Australia and New Zealand. Methods: A web-based survey was distributed to 19 senior paediatric and adult IBD clinicians under the auspices of AIBDA. In addition to demo-graphic details, respondents were asked to rate on a scale of 1–5 (using a Likert scale which varied from 1 – strongly disagree to 5 – strongly agree) the importance of the various competencies of adolescents with IBD required for successful transition as well as the barriers to transition and ideal methods for delivery of transition care. Results: There was a 95% (18/19) response rate (50% of respondents were adult gastroenterologists and 50% were paediatric gastroenterologists). Eighty-nine percent of respondents agreed that a structured transition process was desirable for adolescents with IBD. Readiness for transfer/transition: Less than a quarter of respondents (22%) felt that adolescents with IBD were adequately prepared for their transition from paediatric to adult care. Compared to adult gastroenterologists, paediatric gastroenterologists emphasized the importance of psychological maturity (P < 0.01), growth/nutrition status (P < 0.05) and achievement of educational milestones (P < 0.05). Timing of Transfer: Completion of schooling and self-efficacy were both seen as being more important in determining the timing of transfer than chronological age or disease activity. Achievement of clinical remission and need for pelvic surgery were felt to be the most important disease factors in timing of transfer. Barriers to effective transition: Poor handover between paediatric and adult medical units was the most commonly cited barrier to effective transition. Compared to adult gastroenterologists, paediatric gastroenterologists emphasized lack of continuity in adult practice (P < 0.05), patient distance from a tertiary centre (P < 0.05) and lack of self-efficacy (P < 0.001) as barriers to effective transition. Seventy-eight percent of adult gastroenterologists felt that their training in the care of adolescents with chronic diseases and their knowledge of assessment of growth and nutritional status in adolescent patients was inadequate. Conclusion: This survey highlights a number of barriers that exist to the successful transition of adolescents with IBD from paediatric to adult care. A structured transfer and transition process including development of handover tools, and protocols for timing of transition may improve the outcomes of transition in IBD.