Validation and application of health utilities index in Chinese subjects with Down Syndrome

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

Poster Presentation (Doctor’s Session)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

Insights on Sensitive Language Use in the Hong Kong Healthcare Setting: Perceptions of Parents and Caregivers of Patients Affected with Down Syndrome

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What should be said and what should not be said? − Perception of parents and caregivers of individuals with Down Syndrome in Hong Kong on sensitive language in Cantonese used in healthcare setting

Poster Presentation (Doctor’s Session)BACKGROUND: Every word that health professionals said may be heavily valued, making it particularly imperative for us to select word choices appropriately. To our knowledge, there is limited medical linguistics study in Cantonese to date. Down syndrome (DS) is a common genetic and parents of individuals with DS have extensive experience in interacting with health professionals. This current study aims to explore the perception of parents and caregivers of individuals of DS on the language used in healthcare settings in Hong Kong. METHOD: We recruited parents/caregivers of individuals with DS through Hong Kong Down Syndrome Association (HKDSA). Parents/caregivers were invited to complete a questionnaire with words adapted from a study on sensitive language used in genetics (Hodgson et al., 2005). The questionnaire was reviewed critically by the HKDSA scientific committee. Participants were asked to rate each words/phrases as "offensive"/"not offensive", offer alternatives to the words listed and give other words/phrases based on their past experience in healthcare setting which they found as offensive. RESULT: We have recruited 116 parents / caregivers of individuals with DS (age 5-55). Most participants rated " become a burden" (82%), " useless" (77%), " hopeless" (77%) and " abnormal" (76%) as "offensive". Some participants suggested alternative words, such as " special" instead of " become a burden" and " abnormal" respectively. Some participants also gave their other perceived offensive words, such as " Mongols". On the other hand, the least rated "offensive" words are " Chromosome deviant" (35%), " growth delay" (35%) and " handicapped person" (34%). CONCLUSION: Overall, the findings of this study showed that words that were mostly colloquial, dysphemism, or slang commonly used in vernacular speech were rated as offensive by most participants. On the other hand, literary terms were more acceptable. The findings reflect that participants have sensitive impression on the language used in medical setting. This has implication in the practice of genetic counseling. Health professionals should be aware of their choice of language in order to provide support to parents and caregivers of individuals with special needs