Clinical transition for adolescents with developmental disabilities in Hong Kong : a pilot study

Abstract

Introduction: Children with developmental disabilities usually move from the paediatric to adult health service after the age of 18 years. This clinical transition is fragmented in Hong Kong. There are no local data for adolescents with developmental disabilities and their families about the issues they face during the clinical transition. This pilot study aimed to explore and collect information from adolescents with developmental disabilities and their caregivers about their transition from paediatric to adult health care services in Hong Kong. Methods: This exploratory survey was carried out in two special schools in Hong Kong. Convenient samples of adolescents with developmental disabilities and their parents were taken. The questionnaire was administered by interviewers in Cantonese. Descriptive statistics were used to analyse the answers to closed-ended questions. Responses to open-ended questions were summarised. Results: In this study, 22 parents (mean age ± standard deviation: 49.9 ± 10.0 years) and 13 adolescents (19.6 ± 1.0 years) completed the face-to-face questionnaire. The main diagnoses of the adolescents were cerebral palsy (59%) and cognitive impairment (55%). Of the study parents, 77% were reluctant to transition. For the 10 families who did move to adult care, 60% of the parents were not satisfied with the services. The main reasons were reluctant to change and dissatisfaction with the adult medical service. The participants emphasised their need for a structured clinical transition service to support them during this challenging time. Conclusions: This study is the first in Hong Kong to present preliminary data on adolescents with developmental disabilities and their families during transition from paediatric to adult medical care. Further studies are required to understand the needs of this population group during clinical transition.