Quality of Life Research

, Volume 17, Issue 9, pp 1163–1171

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

  • Annette Majnemer
  • Michael Shevell
  • Mary Law
  • Chantal Poulin
  • Peter Rosenbaum
Article

DOI: 10.1007/s11136-008-9394-6

Cite this article as:
Majnemer, A., Shevell, M., Law, M. et al. Qual Life Res (2008) 17: 1163. doi:10.1007/s11136-008-9394-6

Abstract

Background

Quality of life is recognized as an important outcome of health services. Ideally, the child’s perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities.

Purpose

In a sample of school-aged children with cerebral palsy (CP), we compared a parent’s perspective of their child’s quality of life with their child’s own perspective, when feasible.

Methods

Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III–V). A parent completed the proxy version and the scores were compared.

Results

Intraclass correlation (ICC) coefficients were high for physical (ICC = 0.72, confidence interval [CI]: 0.55–0.83) and moderate for psychosocial (ICC = 0.54, CI: 0.30–0.71) well-being, with the weakest agreement on school functioning and the strongest agreement for ratings of physical health. Parental ratings were more often lower, especially for social functioning, although children rated themselves lower on emotional functioning. Factors associated with a closer agreement between parent–child pairs included older age, male gender, higher social competency, functional abilities, and fewer emotional symptoms (r2 = 0.07–0.30).

Conclusion

In children with CP, parents’ ratings of their children’s quality of life are generally comparable as a group to their child’s self-report. Disparities do exist, particularly in psychosocial domains, and, therefore, the child’s own perspective should be considered whenever feasible.

Keywords

Quality of life Reliability of results CP (cerebral palsy) Child 

Abbreviations

CP

Cerebral palsy

ICC

Intraclass correlation

PedsQL

Pediatric Quality of Life Inventory

VABS

Vineland Adaptive Behavior Scale

CAPE

Children’s Assessment of Participation and Enjoyment

GMFM

Gross Motor Function Measure

GMFCS

Gross Motor Function Classification System

DMQ

Dimensions of Mastery Questionnaire

SDQ

Strengths and Difficulties Questionnaire

PSI

Parenting Stress Index

IOF

Impact on Family Scale

IQ

Intelligence quotient

QOL

Quality of life

Copyright information

© Springer Science+Business Media B.V. 2008

Authors and Affiliations

  • Annette Majnemer
    • 1
    • 2
  • Michael Shevell
    • 2
  • Mary Law
    • 3
  • Chantal Poulin
    • 2
  • Peter Rosenbaum
    • 4
  1. 1.School of Physical & Occupational TherapyMcGill University, Montreal Children’s HospitalMontrealCanada
  2. 2.Departments of Neurology & Neurosurgery and Pediatrics, Division of Pediatric NeurologyMcGill University, Montreal Children’s HospitalMontrealCanada
  3. 3.School of Rehabilitation ScienceMcMaster University, CanChild Centre for Childhood Disability ResearchHamiltonCanada
  4. 4.Department of PediatricsMcMaster University, CanChild Centre for Childhood Disability ResearchHamiltonCanada

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