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Children with Cerebral Palsy, Psychometric Analysis and Quality of Life

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Handbook of Disease Burdens and Quality of Life Measures

Abstract:

Cerebral palsy (CP) is the most common physical disability in childhood, occurring in 2–2.5 per 1,000 live births. Given that many interventions aim to increase the quality of life of children with CP, increasingly researchers and clinicians are seeking to measure children’s quality of life (QOL). QOL refers to wellbeing, or feelings about life, across multiple domains of life. The QOL literature includes generic and condition-specific instruments, both of which have different purposes. Generic instruments are designed to be applicable to all population sub-groups, whilst condition-specific instruments are designed to be applicable to one group. Several generic QOL instruments have been used to measure the QOL of children with CP, including the Child Health Questionnaire (CHQ) (Landgraf et al., 1996), the Pediatric QOL Inventory (PedsQL) (Varni et al., 2006) and KIDSCREEN (Ravens-Sieberer et al., 2005). Four condition-specific QOL/health-related QOL (HRQOL) instruments have recently been developed, including the Cerebral Palsy QOL Questionnaire for Children (CP QOL-Child) (Waters et al., 2007), the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) (Narayanan et al., 2006), the PedsQL-CP Module (Varni et al., 2006) and DISABKIDS (Bullinger et al., 2002). In order to assist researchers and clinicians to choose among these instruments, their attributes are compared, including the original purpose, number of items, the domains, country of origin, reliability, validity, sensitivity to change, age range, and respondents.

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Abbreviations

BTX-A:

Botulinum Toxin A

CHQ:

child health questionnaire

CP:

cerebral palsy

CPCHILD:

the caregiver priorities and child health index of life with disabilities

CP QOL-Child:

cerebral palsy quality of life questionnaire for children

HRQOL:

health related quality of life

PedsQL:

pediatric quality of life inventory

PedsQL – CP Module:

pediatric quality of life inventory – cerebral palsy module

QALY:

quality adjusted life year

QOL:

quality of life

RCT:

randomized controlled clinical trial

WHO:

World Health Organisation

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Authors and Affiliations

  1. McCaughey Centre, VicHealth Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne, VIC, Australia

    E. Davis & E. Waters

Authors
  1. E. Davis
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  2. E. Waters
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Editor information

Editors and Affiliations

  1. Dept. Nutrition and Dietetics Nutritional Sciences Research Division School of Biomedical & Health Sciences, King's College London, Franklin‐Wilkins Building 150 Stamford Street, SE1 9NH, London, UK

    Victor R. Preedy (Prof.) (Prof.)

  2. Mel and Enid Zuckerman College of Public Health, University of Arizona, Health Science Center 1295 N. Martin, P.O. Box 245155, 85724-5155, Tucson, AZ

    Ronald R. Watson (Prof.) (Prof.)

Appendices

Appendix 1

CP QOL – Child Manual.

Appendix 2

CP QOL – Primary Caregiver Questionnaire.

Appendix 3

CP QOL – Child Self Report Questionnaire.

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Davis, E., Waters, E. (2010). Children with Cerebral Palsy, Psychometric Analysis and Quality of Life. In: Preedy, V.R., Watson, R.R. (eds) Handbook of Disease Burdens and Quality of Life Measures. Springer, New York, NY. https://doi.org/10.1007/978-0-387-78665-0_212

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  • DOI: https://doi.org/10.1007/978-0-387-78665-0_212

  • Publisher Name: Springer, New York, NY

  • Print ISBN: 978-0-387-78664-3

  • Online ISBN: 978-0-387-78665-0

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