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

TitleHealth-related quality of life of Chinese individuals with Down Syndrome in Hong Kong
Authors
Issue Date2013
PublisherMedcom Limited. The Journal's web site is located at http://www.hkjpaed.org/index.asp
Citation
The 2013 Joint Annual Scientific Meeting of The Hong Kong Paediatric Society and Hong Kong Paediatric Nurses Association, Hong Kong, 8 September 2013. In Hong Kong Journal of Paediatrics (New series), 2013, v. 18 n. 4, p. 252 How to Cite?
AbstractPURPOSE: 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.
DescriptionPoster Presentation (Doctor’s Session)
Persistent Identifierhttp://hdl.handle.net/10722/190132
ISSN
2015 Impact Factor: 0.194
2015 SCImago Journal Rankings: 0.123

 

DC FieldValueLanguage
dc.contributor.authorMok, WKYen_US
dc.contributor.authorWong, WHSen_US
dc.contributor.authorChu, WYen_US
dc.contributor.authorChung, BHYen_US
dc.contributor.authorIp, Pen_US
dc.date.accessioned2013-09-17T15:12:09Z-
dc.date.available2013-09-17T15:12:09Z-
dc.date.issued2013en_US
dc.identifier.citationThe 2013 Joint Annual Scientific Meeting of The Hong Kong Paediatric Society and Hong Kong Paediatric Nurses Association, Hong Kong, 8 September 2013. In Hong Kong Journal of Paediatrics (New series), 2013, v. 18 n. 4, p. 252en_US
dc.identifier.issn1013-9923-
dc.identifier.urihttp://hdl.handle.net/10722/190132-
dc.descriptionPoster Presentation (Doctor’s Session)-
dc.description.abstractPURPOSE: 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.-
dc.languageengen_US
dc.publisherMedcom Limited. The Journal's web site is located at http://www.hkjpaed.org/index.asp-
dc.relation.ispartofHong Kong Journal of Paediatrics (New series)en_US
dc.titleHealth-related quality of life of Chinese individuals with Down Syndrome in Hong Kongen_US
dc.typeConference_Paperen_US
dc.identifier.emailWong, WHS: whswong@hku.hken_US
dc.identifier.emailChu, WY: chuwyy@hku.hken_US
dc.identifier.emailChung, BHY: bhychung@hku.hken_US
dc.identifier.emailIp, P: patricip@hku.hken_US
dc.identifier.authorityChung, BHY=rp00473en_US
dc.identifier.authorityIp, P=rp01337en_US
dc.identifier.hkuros225105en_US
dc.identifier.volume18-
dc.identifier.issue4-
dc.identifier.spage252en_US
dc.identifier.epage252en_US
dc.publisher.placeHong Kong-

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