Caregiver-Reported Quality of Life in Youth with Down Syndrome

Melissa S. Xanthopoulos, Rachel Walega, Rui Xiao, Divya Prasad, Mary M. Pipan, Babette S. Zemel, Robert I. Berkowitz, Sheela Magge, Andrea Kelly

Research output: Contribution to journalArticle

Abstract

Objectives To describe caregiver-reported quality of life (QOL) in youth with Down syndrome (DS) and to examine the role of obesity on QOL. Study design Caregivers of youth with and without DS aged 10 through 20 years completed questionnaires examining QOL (Pediatric Quality of Life Questionnaire) and weight-related QOL (Impact of Weight on Quality of Life – Kids). Age- and sex-specific z scores were generated for body mass index. Obesity was defined as a body mass index ≥95th percentile for age and sex. Results Caregiver-reported Total QOL, Physical Health, and Psychosocial Health summary scores were all lower in the DS group compared with the non-DS controls (P <.001). Social and School Functioning were also lower (P <.001), but Emotional Functioning did not differ between DS and non-DS groups (P =.31). Physical Functioning (P =.003) and Total scores (P =.03) differed between youth without DS with and without obesity, but no differences were reported between youth with DS with and without obesity. On the Impact of Weight on Quality of Life – Kids, caregivers of youth with DS reported greater Body Esteem (P =.020) and Social Life scores (P =.03) than caregivers of non-DS youth. Caregivers of youth with obesity, regardless of DS status, reported significantly lower weight-specific QOL scores than caregivers of youth without obesity. Conclusion Caregivers reported lower QOL in youth with DS compared with youth without DS with the exception of emotional functioning. Obesity influences most domains of weight-related QOL in youth with and without DS; therefore, providers should address weight concerns in youth with obesity even in the presence of DS. Clinical Trial Registration NCT01821300.

Original languageEnglish (US)
Pages (from-to)98-104.e1
JournalJournal of Pediatrics
Volume189
DOIs
StatePublished - Oct 1 2017
Externally publishedYes

Fingerprint

Down Syndrome
Caregivers
Quality of Life
Obesity
Weights and Measures
Body Mass Index
Health
Clinical Trials
Pediatrics

Keywords

  • Down syndrome
  • obesity
  • quality of life
  • youth

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

Cite this

Xanthopoulos, M. S., Walega, R., Xiao, R., Prasad, D., Pipan, M. M., Zemel, B. S., ... Kelly, A. (2017). Caregiver-Reported Quality of Life in Youth with Down Syndrome. Journal of Pediatrics, 189, 98-104.e1. https://doi.org/10.1016/j.jpeds.2017.06.073

Caregiver-Reported Quality of Life in Youth with Down Syndrome. / Xanthopoulos, Melissa S.; Walega, Rachel; Xiao, Rui; Prasad, Divya; Pipan, Mary M.; Zemel, Babette S.; Berkowitz, Robert I.; Magge, Sheela; Kelly, Andrea.

In: Journal of Pediatrics, Vol. 189, 01.10.2017, p. 98-104.e1.

Research output: Contribution to journalArticle

Xanthopoulos, MS, Walega, R, Xiao, R, Prasad, D, Pipan, MM, Zemel, BS, Berkowitz, RI, Magge, S & Kelly, A 2017, 'Caregiver-Reported Quality of Life in Youth with Down Syndrome', Journal of Pediatrics, vol. 189, pp. 98-104.e1. https://doi.org/10.1016/j.jpeds.2017.06.073
Xanthopoulos MS, Walega R, Xiao R, Prasad D, Pipan MM, Zemel BS et al. Caregiver-Reported Quality of Life in Youth with Down Syndrome. Journal of Pediatrics. 2017 Oct 1;189:98-104.e1. https://doi.org/10.1016/j.jpeds.2017.06.073
Xanthopoulos, Melissa S. ; Walega, Rachel ; Xiao, Rui ; Prasad, Divya ; Pipan, Mary M. ; Zemel, Babette S. ; Berkowitz, Robert I. ; Magge, Sheela ; Kelly, Andrea. / Caregiver-Reported Quality of Life in Youth with Down Syndrome. In: Journal of Pediatrics. 2017 ; Vol. 189. pp. 98-104.e1.
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abstract = "Objectives To describe caregiver-reported quality of life (QOL) in youth with Down syndrome (DS) and to examine the role of obesity on QOL. Study design Caregivers of youth with and without DS aged 10 through 20 years completed questionnaires examining QOL (Pediatric Quality of Life Questionnaire) and weight-related QOL (Impact of Weight on Quality of Life – Kids). Age- and sex-specific z scores were generated for body mass index. Obesity was defined as a body mass index ≥95th percentile for age and sex. Results Caregiver-reported Total QOL, Physical Health, and Psychosocial Health summary scores were all lower in the DS group compared with the non-DS controls (P <.001). Social and School Functioning were also lower (P <.001), but Emotional Functioning did not differ between DS and non-DS groups (P =.31). Physical Functioning (P =.003) and Total scores (P =.03) differed between youth without DS with and without obesity, but no differences were reported between youth with DS with and without obesity. On the Impact of Weight on Quality of Life – Kids, caregivers of youth with DS reported greater Body Esteem (P =.020) and Social Life scores (P =.03) than caregivers of non-DS youth. Caregivers of youth with obesity, regardless of DS status, reported significantly lower weight-specific QOL scores than caregivers of youth without obesity. Conclusion Caregivers reported lower QOL in youth with DS compared with youth without DS with the exception of emotional functioning. Obesity influences most domains of weight-related QOL in youth with and without DS; therefore, providers should address weight concerns in youth with obesity even in the presence of DS. Clinical Trial Registration NCT01821300.",
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N2 - Objectives To describe caregiver-reported quality of life (QOL) in youth with Down syndrome (DS) and to examine the role of obesity on QOL. Study design Caregivers of youth with and without DS aged 10 through 20 years completed questionnaires examining QOL (Pediatric Quality of Life Questionnaire) and weight-related QOL (Impact of Weight on Quality of Life – Kids). Age- and sex-specific z scores were generated for body mass index. Obesity was defined as a body mass index ≥95th percentile for age and sex. Results Caregiver-reported Total QOL, Physical Health, and Psychosocial Health summary scores were all lower in the DS group compared with the non-DS controls (P <.001). Social and School Functioning were also lower (P <.001), but Emotional Functioning did not differ between DS and non-DS groups (P =.31). Physical Functioning (P =.003) and Total scores (P =.03) differed between youth without DS with and without obesity, but no differences were reported between youth with DS with and without obesity. On the Impact of Weight on Quality of Life – Kids, caregivers of youth with DS reported greater Body Esteem (P =.020) and Social Life scores (P =.03) than caregivers of non-DS youth. Caregivers of youth with obesity, regardless of DS status, reported significantly lower weight-specific QOL scores than caregivers of youth without obesity. Conclusion Caregivers reported lower QOL in youth with DS compared with youth without DS with the exception of emotional functioning. Obesity influences most domains of weight-related QOL in youth with and without DS; therefore, providers should address weight concerns in youth with obesity even in the presence of DS. Clinical Trial Registration NCT01821300.

AB - Objectives To describe caregiver-reported quality of life (QOL) in youth with Down syndrome (DS) and to examine the role of obesity on QOL. Study design Caregivers of youth with and without DS aged 10 through 20 years completed questionnaires examining QOL (Pediatric Quality of Life Questionnaire) and weight-related QOL (Impact of Weight on Quality of Life – Kids). Age- and sex-specific z scores were generated for body mass index. Obesity was defined as a body mass index ≥95th percentile for age and sex. Results Caregiver-reported Total QOL, Physical Health, and Psychosocial Health summary scores were all lower in the DS group compared with the non-DS controls (P <.001). Social and School Functioning were also lower (P <.001), but Emotional Functioning did not differ between DS and non-DS groups (P =.31). Physical Functioning (P =.003) and Total scores (P =.03) differed between youth without DS with and without obesity, but no differences were reported between youth with DS with and without obesity. On the Impact of Weight on Quality of Life – Kids, caregivers of youth with DS reported greater Body Esteem (P =.020) and Social Life scores (P =.03) than caregivers of non-DS youth. Caregivers of youth with obesity, regardless of DS status, reported significantly lower weight-specific QOL scores than caregivers of youth without obesity. Conclusion Caregivers reported lower QOL in youth with DS compared with youth without DS with the exception of emotional functioning. Obesity influences most domains of weight-related QOL in youth with and without DS; therefore, providers should address weight concerns in youth with obesity even in the presence of DS. Clinical Trial Registration NCT01821300.

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