The Cerebral Palsy Quality of Life Questionnaire

The Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) and Cerebral Palsy Quality of Life Questionnaire for Adolescents (CP QOL-Teen) are condition specific quality of life instruments. These instruments are useful for evaluating interventions designed to improve the lives of children and adolescents. The CP QOL-Child was first designed to assess the quality of life of children with cerebral palsy aged 4-12 years and an adolescent version, the CP QOL-Teen, has recently been developed for adolescents aged 13-18 years.


What is CP QOL?

The CP QOL-Child and CP QOL-Teen are quality of life questionnaires for children and adolescents with cerebral palsy that can be used by researchers, clinicians, health professionals and educators. The CP QOL-Child and CP QOL-Teen were developed by an international team of clinicians and researchers at The University of Melbourne and the Royal Children’s Hospital.

The CP QOL-Child and CP QOL-Teen were based on the assumption that quality of life is an assessment of wellbeing across various domains of life. The CP QOL-Child and CP QOL-Teen were developed from qualitative interviews with children and adolescents with cerebral palsy and their carers or parents. For further information about the development of the instruments, please refer to our publications.

CP QOL-Child

The CP QOL-Child was designed to assess the quality of life of children aged 4-12 years. There are two versions, including a primary caregiver/parent report for children aged 4 to 12 years; and a self-report for children aged 9 to 12 years.

Download CP QOL-Child Primary Caregiver (4-12yrs)

Download CP-QOL Child Self Report (9-12yrs)

Download the CP QOL-Child Manual

CP QOL-Teen

The CP QOL Teen is designed for adolescents aged 13-18 years. There is an adolescent self-report version and a primary caregiver version.

Download CP QOL-Teen Primary Caregiver

Download CP QOL-Teen self report

Download CP QOL-Teen manual


What is measured by CP-QOL Questionnaires?

CP QOL-Child

  • Social wellbeing & acceptance
  • Feelings about functioning
  • Participation & physical health
  • Emotional wellbeing & self-esteem
  • Access to services
  • Pain & impact of disability
  • Family health

CP QOL-Teen

  • General wellbeing & participation
  • Feelings about functioning
  • Communication & physical health
  • School wellbeing
  • Access to services
  • Social wellbeing
  • Family health

Using the CP QOL questionnaires

The questionnaires are made freely available to researchers and can be downloaded above. Please note the CP QOL group holds the copyright for all CP QOL questionnaires, including the parent proxy and self-report questionnaires. Researchers using the CP QOL questionnaires shall not modify, abridge, condense, adapt, recast or transform the CP QOL instruments in any manner or form without the prior agreement of the CP QOL research group. This includes but is not limited to any minor or significant change in wordings or organisation in the questionnaires.


Translation

The CP QOL questionnaires have been, or are in the process of being, translated in the following languages. Arabic, Bahasa Indonesian, Bahasa Malaysian, Dutch, Farsi, French, German, Greek, Hebrew, Italian, Korean, Mandarin, Myanmar, Polish, Portuguese, Serbian, Spaniah, Tamil, Thai and Turkish. The English speaking countries that are using the questionnaires include: Australia, United Kingdom, New Zealand, United States of America and Jamaica.

Researchers interested in using the CP QOL questionnaires are asked to seek agreement from the CP QOL research group. If you would like to translate the CP QOL-Child into another language please review the Translating Questionnaires manual below.

CP QOL Translation Manual


Publications

  • Davis E; Mackinnon A; Davern M; Boyd R; Bohanna I; Waters E; H.K Graham; Reid S; Reddihough D. Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy. Research in Developmental Disabilities 2013; 34: 344-35.
  • Davis E, Mackinnon A, Waters E. Parent-proxy reported quality of life for children with cerebral palsy: Is it related to parental psychosocial distress? Child: Care, Health and Development. 2011; 38(4): 553-560.
  • Davis E, Shelly A, Waters E, Davern M: Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Devlopmental Medicine & Child Neurology. 2010; 52(2): 174-80.
  • Waters E, Davis E, Ronen G, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Developmental Medicine and Child Neurology. 2009; 51(8), 660-669.
  • Davis E, Davies B, Wolfe R, Raadsveld R, Heine B, Thomason P, Dobson F, Graham K. A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. Developmental Medicine and Child Neurology. 2009; 51: 111-119.
  • Davis E, Shelly A, Waters E, Reddihough D, Boyd R, Cook K, Casey E. The impact of caring for a child with cerebral palsy: Quality of life for mothers and fathers. Submitted to Child: Care, Health and Development. 2009; 36(1): 63-73.
  • Davis E, Shelly A, Waters E, Mackinnon A, Reddihough D, Boyd R, Graham HK. Quality of life for adolescents with cerebral palsy: Perspectives of adolescents and parents. Developmental Medicine and Child Neurology. 2009; 51: 193–199.
  • Waters E, Shelly A, Davis E. Chapter 9: Condition-specific instruments to measure the Quality of Life (QOL) of Children and Adolescents with Cerebral Palsy (CP). Book Chapter in Jenkinson C, Peters M, Bromberg MB (eds). Quality of Life Measurement in Neurodegenerative Conditions. Cambridge University Press, New York. 2011: 95-113.
  • Davis E, Waters E. Children with cerebral palsy, psychometric analysis and quality of life. In: Victor A Preedy, editor. Handbook of Disease Burdens and Quality of Life Measures. New York: Springer; 2008.
  • Shelly A, Davis E, Waters E, Mackinnon A, Reddihough D, Boyd R, Reid S, Graham HK. The Relationship Between Quality of Life (QOL) and Functioning for Children with Cerebral Palsy. Does Poor Functioning equate with Poor QOL? Developmental Medicine and Child Neurology 2008; 50:199-203.
  • Davis E, Waters E, Mackinnon A, Reddihough D, Boyd R, Graham K. Correspondence: Quality of Life of Children with Cerebral Palsy: Importance of condition-specific instrument and proxy reports. Developmental Medicine and Child Neurology 2008; 50: 167.
  • Davis E, Waters E, Shelly A and Gold L. Children and Adolescents, Measuring the Quality of Life of. In: Kris Heggenhougen and Stella Quah, (eds) International Encyclopedia of Public Health, Vol 1. San Diego: Academic Press; 2008:. 641-648.
  • Davis E, Nicolas C, Waters E, Cook K, Gibbs L, Gosch A, Ravens-Sieberer U. Parent proxy and child self-reported health related quality of life: Using cognitive methods to explain the discordance. Quality of Life Research 2007; 16: 863-871.
  • Waters, E, Davis, E, Mackinnon, A., Boyd, R, Graham, H.K, Lo, S.K, Wolfe, R., Stevenson, R., Bjornson, K., Blair, E, Hoare, P, Ravens-Sieberer, U, Reddihough, D. Psychometric properties of the quality of life questionnaire for children with CP. Developmental Medicine and Child Neurology, 2007; 49: 49-55.
  • Davis E & Waters E. Social exclusion in children with cerebral palsy. Book Chapter. In Cook K & Gilbert K (eds). Life on the margins: Implications for health research. Frenchs Forest: Pearson Education Australia.2006: 181-189.
  • Davis E, Waters E, Boyd R, Reddihough D, McKinnon A, Graham K & Mehmet Radji O. Paediatric QOL Instruments: review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology. 2006; 48: 311-318.
  • Waters E, Maher E, Salmon L, Reddihough D, Boyd R. Development of a condition-specific measure of quality of life for children with cerebral palsy: empirical thematic data reported by parents and children. Child: Care, Health and Development. 2005; 31:127-135.
  • Davis E, Waters E & Mehmet-Radji O. Re: A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. Journal of the National Cancer Institute. 2005; 97: 1-2.
  • Waters, E & Maher, E.. Quality of Life. In V. Moyer (Eds.), Evidence-based Pediatrics & Child Health. British Medical Journal Books.
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