Advances in Therapy

, Volume 34, Issue 8, pp 2058–2069 | Cite as

Health-Related Quality of Life in Individuals with Down Syndrome: Results from a Non-Interventional Longitudinal Multi-National Study

  • Diana Rofail
  • Daniel Froggatt
  • Rafael de la Torre
  • Jamie Edgin
  • Priya Kishnani
  • Renaud Touraine
  • Sarah Whitwham
  • Lisa Squassante
  • Omar Khwaja
  • Xavier Liogier D’Ardhuy
Original Research

Abstract

Introduction

To date, there is little research on health-related quality of life (HRQoL) in Down syndrome (DS), and existing research is variable with regard to reported HRQoL in DS. There are also no HRQoL measures developed specifically to be used with individuals with Down syndrome.

Methods

A multi-national, longitudinal, 24-week non-interventional study was conducted in adolescents and adults with DS. HRQoL was assessed (n = 90) using the parent-report KIDSCREEN-27 questionnaire.

Results

HRQoL domain scores were found to be similar to those in the KIDSCREEN-27 European normative group data set on the Physical Well-being, Psychological Well-being, Autonomy and Parent Relations domains. Compared with the normative data set, the adolescent participants with DS in the current study were found to have lower scores on the Social Support and Peers domain and higher scores than the normative group on the School Environment domain. The test-retest reliability of the KIDSCREEN-27 was also examined using the intraclass correlation coefficient (ICC) in a subgroup of stable participants. The KIDSCREEN-27 demonstrated poor-to-moderate test-retest reliability; however, test-retest reliability was assessed using a long time interval between assessment time points.

Conclusion

The findings of this study underline that further research is needed to better understand the nature of HRQoL in DS. Further research using a shorter time interval between assessment time points to examine test-retest reliability is also required.

Funding

F. Hoffmann-La Roche Ltd.

Keywords

Down syndrome Health-related quality of life HRQoL KIDSCREEN-27 Longitudinal study Non-interventional study Parent-report Test-retest reliability 

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Copyright information

© Springer Healthcare Ltd. 2017

Authors and Affiliations

  • Diana Rofail
    • 1
  • Daniel Froggatt
    • 1
  • Rafael de la Torre
    • 2
  • Jamie Edgin
    • 3
  • Priya Kishnani
    • 4
  • Renaud Touraine
    • 5
  • Sarah Whitwham
    • 6
  • Lisa Squassante
    • 7
  • Omar Khwaja
    • 7
  • Xavier Liogier D’Ardhuy
    • 7
  1. 1.Roche Products LimitedWelwyn Garden CityUK
  2. 2.Hospital del Mar Medical Research Institute (IMIM)BarcelonaSpain
  3. 3.University of ArizonaTusconUSA
  4. 4.Duke UniversityDurhamUSA
  5. 5.CHU-Hopital NordSaint EtienneFrance
  6. 6.Cornwall Partnership NHS Foundation TrustRedruthUK
  7. 7.Roche Innovation Center Basel, F. Hoffmann-La Roche LtdBaselSwitzerland

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