Transition of children with chronic gastrointestinal and liver disease to adult care: A multicentre Asian survey of paediatric gastroenterologists

Abstract

OBJECTIVES: The rising incidence of chronic gastrointestinal conditions and better survival of children with life-limiting diseases have resulted in the need for continuity of care into adulthood. This study aimed to detail transition practices in paediatric gastroenterology and hepatology within Asia. METHODS: Paediatric gastroenterologists were invited to complete a web-based survey administered through a regional paediatric gastroenterology society to its members. The questionnaire was designed based on the 'Transition Policy Survey' and 'Barriers to Transition Care in Inflammatory Bowel Disease (IBD) Questionnaire'. RESULTS: One hundred and nine paediatric gastroenterologists from 10 countries participated. Key factors influencing timing of transfer included patients demonstrating responsibility for their own care (mean 3.5 ± standard deviation [SD] 0.6, scale of 1-4, 1 = not important, 4 = very important), knowledge of disease and its prognosis (mean 3.40 ± SD 0.7), and emergence of adult-specific health issues (mean 3.38 ± SD 0.8). The 'ideal' age for transition was felt to be 18 (59%). Most clinicians would begin pre-transition preparation 2 years prior. Whilst all felt transition services were important, only 59% provided such care. Services were unavailable (28%) or ad-hoc (11%) in many centres. The top barriers to successful transition were patient-related (36%), parent-related (27%) and lack of engagement with adult subspecialty counterparts (21%). CONCLUSION: This study provides real-world data regarding transition practices in Asia. Beyond patient-related barriers, parent-related factors (possibly cultural influence) were significant. Transition care programs in the region and those including patients from Asia would need to be cognisant of these issues when planning transition of these patients to adult services.