Health-related quality of life of Chinese individuals with Down Syndrome in Hong Kong

Abstract

PURPOSE: Down syndrome is a chromosomal disorder commonly associated with intellectual disabilities, multiple health issues such as congenital heart disease. Consequently, wellbeing of people with Down syndrome is likely to be compromised. Data on health-related quality of life for people with Down syndrome is limited globally and notably missing amongst Chinese. This study aims to evaluate the health-related quality of life (HRQoL) of people with Down syndrome in Hong Kong by using a Chinese version of Health Utilities Index (HUI). METHODS: Parents or caregivers of people with Down Syndrome were recruited by the Hong Kong Down Syndrome Association to complete a self-designed questionnaire. Data on socio-demographics, 10 chronic health conditions, and HRQoL scores from a translated Chinese version of HUI instrument (proxy version) were analysed. Multiple imputation and multiple regression analysis were used to predict variations in HRQoL due to different factors. Predictors of changes in HRQoL scores were explored using multiple regression. RESULTS: Of the 109 people (aged 5-53) with Down Syndrome analysed, 60% (HUI2) and 72% (HUI3) of the subject scored 'severe' (HUI2<0.8, HUI3<0.7) in the disability scale. Behavioural problems (HUI2) and hearing problems (HUI2 and HUI3) appear to be statistically significant predictors (p-value<0.05) resulting in a less favorable HRQoL score. A statistically significant dose response relationship was observed where HRQoL scores decreases as number of developmental-behaviour problems increases. Increasing number of physical problems was inconclusive. Multiple chronic health problems were also found to have dose response effect on HRQoL scores. CONCLUSION: Our study demonstrated that people with Down syndrome of both children and adults in Hong Kong experience a deficit in HRQoL, with behaviour problems and hearing problems being predictors of lower HRQoL. Such understanding warrants healthcare professionals to provide surveillance program and appropriate therapy to target hearing and behaviour problems. In addition, healthcare professionals should also be mindful of developmental behavioural problems as dosage effect greatly compromise their HRQoL. Overall, these results would also be useful for healthcare professionals, social workers, and genetic counselors to communicate to parents or caregivers about the realistic outcome of caring for someone with Down syndrome.