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An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

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  • Fatma Haddad
  • Jenny Bourke
  • Kingsley Wong
  • Helen Leonard

Abstract

Background: Young people with Down syndrome experience varying abilities in activities of daily living, cognitive functioning, behaviour and social skills. The aim of this research was to investigate, from a carer’s perspective, the factors that influenced the quality of life of these young people. Methods: Families of young people with Down syndrome (n = 197), aged 16–31 years, living in Western Australia, took part in a questionnaire study regarding young person daily functioning, family characteristics, medical background and quality of life measured by the Kidscreen 27-item scale. Kidscreen-10 total score was used as an outcome in the investigation of determinants with higher scores indicating better quality of life. Results: After adjustment for confounders including carer’s mental health measured by the Depression and Anxiety Scale (DASS), global impact of illness as well as impact of mental health and bowel conditions were all negatively associated with the young person’s quality of life. Young people who had three or more friends had better quality of life than those with no friends. Scores were lower (reflecting poor quality of life) in individuals who had more behavioural problems but these relationships were attenuated after adjustment for confounders and DASS. Conclusions: Overall, our findings revealed that quality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships. We were somewhat surprised to find the effect of medical problems on quality of life persisting into adolescence and adulthood where in general the burden of medical comorbidities is much less than in childhood.

Suggested Citation

  • Fatma Haddad & Jenny Bourke & Kingsley Wong & Helen Leonard, 2018. "An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome," PLOS ONE, Public Library of Science, vol. 13(6), pages 1-19, June.
  • Handle: RePEc:plo:pone00:0197394
    DOI: 10.1371/journal.pone.0197394
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    1. Mariana Rabello Laignier & Luís Carlos Lopes-Júnior & Raquel Esperidon Santana & Franciéle Marabotti Costa Leite & Carolina Laura Brancato, 2021. "Down Syndrome in Brazil: Occurrence and Associated Factors," IJERPH, MDPI, vol. 18(22), pages 1-11, November.
    2. Peters, Vincent & Meijboom, Bert & Bunt, Jan Erik & Bok, Vinus & van Steenbergen, M. & de Winter, Peter & de Vries, Esther, 2020. "Providing person-centered care for patients with complex healthcare needs: A qualitative study," Other publications TiSEM 0b45f3fc-0b4a-43ad-b66f-4, Tilburg University, School of Economics and Management.

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