Measuring Health-Related Quality of Life of Adults With Down Syndrome

Graves, Rebecca; Graff, J. Carolyn; Esbensen, Anna J.; Hathaway, Donna; Wan, Jim Y.; Wicks, Mona

doi:10.1352/1944-7558-121.4.312

Cited by 21 publications

(20 citation statements)

References 32 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The lower domain scores for physical wellbeing and social support seen in both studies were also consistent with the negative effects of disease burden and lack of friendships that we also identified. In another study, adults with Down syndrome aged 18–61 years completed an oral interview in which they provided responses to the Quality Metric Short Form-12 version 2 (SF-12v2) instrument [ 38 ]. Compared with a normative sample from the general population, these 60 adults with Down syndrome had higher than average quality of life scores, although the authors acknowledged that their sample was potentially healthier and not representative of the underlying population.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2018

View full text Add to dashboard Cite

BackgroundYoung 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.MethodsFamilies 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.ResultsAfter 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.ConclusionsOverall, 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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

et al. 2018

View full text Add to dashboard Cite

show abstract

“…Health-related quality of life (HRQOL) is generally conceptualized as a multidimensional construct encompassing domains including psychological, mental, social, and spiritual areas of life 8 ) . Korean version of KIDSCREEN 52-HRQOL is a tool for standardized life quality evaluation.…”

Section: Methodsmentioning

confidence: 99%

A comparison of the function, activity and participation and quality of life between down syndrome children and typically developing children

2017

View full text Add to dashboard Cite

[Purpose] To compare function, activity, participation, and quality of life of Down syndrome children and typically developing children according to age. [Subjects and Methods] A total of 16 Down syndrome children and 20 children with typical development were included as subjects for this study. International Classification of Functioning, Disability, and Health (ICF) Child and Youth version (CY) developed by the World Health Organization (WHO) and a questionnaire were used to measure children’s functioning, activity, and participation. To measure quality of life, KIDSCREEN 52-HRQOL questionnaire was used in this study. [Results] ICF-CY function, activity, participation, and quality of life showed statistically significant differences between Down syndrome children and typically developing children. Down syndrome children with higher functions showed higher activities and participation. Higher function, activity and participation features were correlated with better quality of life. Higher function resulted in better quality of life. [Conclusion] Function, activity, participation, quality of life, and several common factors of Down syndrome children depend on the ability of children. Function of Down syndrome children affects their activity, participation, and quality of life. Activities and participations also affect quality of life. Therefore, children’s functional aspect is the foundation for quality of life.

show abstract

“…Strikingly, little is known about the quality of DS‐specialised health care (van den Driessen Mareeuw, Hollegien, Coppus, Delnoij, & de Vries, ), let alone how it is appraised by people with DS (PDS) and their caregivers (Barelds, van de Goor, van Heck, & Schols, ; Kyrkou, ; Minnes & Steiner, ). Although a number of studies have addressed the assessment of health status and quality of life of people with intellectual disability and DS (Bakker‐van Gijssel et al, ; Graves et al, ; Kyrkou, ; van Schrojenstein Lantman‐de Valk, Linehan, Kerr, & Noonan‐Walsh, ), healthcare quality related to PDS has not been adequately researched (van den Driessen Mareeuw et al, ). Studies that do address quality in health care for PDS are traditionally conducted from a medical professional's perspective (Jensen & Davis, ; Jespersen, Michelsen, Holstein, Tjørnhøj‐Thomsen, & Due, ; Phelps, Pinter, Lollar, Medlen, & Bethell, ).…”

Section: Introductionmentioning

confidence: 99%

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Mareeuw

Coppus

Delnoij

et al. 2019

Research Intellect Disabil

View full text Add to dashboard Cite

Background People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. Method The present authors conducted semi‐structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. Results According to the participants, healthcare quality entails well‐coordinated health care aligned with other support and care systems, a person‐centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS. Conclusions Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.

show abstract

Measuring Health-Related Quality of Life of Adults With Down Syndrome

Cited by 21 publications

References 32 publications

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

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

A comparison of the function, activity and participation and quality of life between down syndrome children and typically developing children

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Contact Info

Product

Resources

About