Quality of life in Irish children with Down syndrome: a cross-sectional study

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Curtin, Ella
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Community-Academic Research Links, University College Cork
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Objectives: Our main aim was to investigate quality of life (QoL) in Irish children with Down Syndrome (DS). We evaluated the impact of chronic health conditions on QoL, and determined whether frequency of screening for these conditions impact QoL. Design: This is a quantitative, cross-sectional study. Setting: This research was community-based, involving children registered with Down Syndrome Ireland (DSI) Munster and Dublin branches. Participants: Target population was parents of children with DS aged 8-18 years old, living in the Republic of Ireland (ROI). A parental survey, the “Kidscreen-27 Health-Related Quality of Life (HRQOL) Questionnaire for Children and Adolescents aged from 8-18 years” (Parents’ version), with additional demographic and health questions was distributed via email by DSI branches to members. -Exclusion criteria: Age >18 years, or residing outside ROI. Primary & Secondary Outcome Measures: Overall HRQOL score for each child was calculated, and sub-category scores within the questionnaire evaluated. Impact of demographic variables, chronic health conditions, and screening intensity for these conditions on HRQOL scores was investigated, along with effect of number of chronic conditions on screening intensity. Analysis included a subgroup of children aged 0-8 years with DS, and parental qualitative feedback. Results: Mean QoL scores were below that of the normative population, with social QoL scores significantly lower than the reference data. Those with higher frequency of medical screens had lower mean QoL. The subgroup with multiple underlying health conditions had the highest frequency of medical screens, and lowest mean QoL scores. Conclusion: Regular screening of children with DS minimises impact of co-morbidities. Unsurprisingly, those with high numbers of co-morbidities have low QoL, but frequent screening and medical appointments also impact QoL. Greater focus on friendship-building and social interaction is hugely important. Strategies for improving screening in the community at General Practitioner (GP) and Area Medical Official clinics should be explored.
Down syndrome , Children with Down syndrome , Quality of life , Cross-sectional study , QoL , 0-8 years , Chronic health conditions
Curtin, E. (2022) Quality of life in Irish children with Down syndrome: a cross-sectional study. Cork: Community-Academic Research Links, University College Cork.
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© 2022, Ella Curtin.