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Quality of Life

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Cerebral Palsy

Abstract

The concept of quality of life (QoL) is very personal for each individual and requires careful consideration when providing care. It may, in fact, be the most important consideration when providing care for individuals with childhood-acquired disabilities. These conditions quite often have long-term impacts on physical health, cognition, and/or behavior with resultant alterations in function and participation. It is therefore critical that care providers understand the definition of QoL, know the options for measuring this concept, and be aware of the goal-focused tools that may be used to incorporate each person’s wants and needs into care plans. This knowledge allows care providers to facilitate care that keeps QoL as a priority.

Although indicators of quality of life have been deemed variable and individual, pain is the single most common element throughout all domains to negatively impact quality of life. Investigation and treatment of pain appears essential for improvement in life quality. Many studies also highlight the need for societal change to maximize inclusion and limit social isolation. It is also of note that with aging, there is an increased link between independence and QoL. Essentially people should feel physically well, socially connected and have optimal independence. These factors appear to enhance positive feelings regarding current life situation and hope for the future, thus adding quality to one’s life.

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References

  1. WHOQOL Group. Measuring quality of life: the development of the WHOQOL instrument. Geneva, Switzerland: World Health Organization; 1997.

    Google Scholar 

  2. Solans M, Pane S, Estrada MD, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health. 2008;11:742–64.

    Article  PubMed  Google Scholar 

  3. World Health Organization. International classification of functioning, disability and health (ICF). Geneva: World Health Organization; 2001.

    Google Scholar 

  4. Waters E, Davis E, Mackinnon A, et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol. 2007;49:49–55.

    Article  PubMed  Google Scholar 

  5. Waters E, Salmon L, Wake M, et al. The child health questionnaire in Australia: reliability, validity and population means. Aust N Z J Public Health. 2000;24:207–10.

    Article  CAS  PubMed  Google Scholar 

  6. Ravens-Sieberer U, Gosch A, Rajmil L, et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5:353–64.

    Article  PubMed  Google Scholar 

  7. Ravens-Sieberer U, Herdman M, Devine J, et al. The European KIDSCREEN approach to measure quality of life and well-being in children: development, current application, and future advances. Qual Life Res. 2014;23:791–803.

    Article  PubMed  Google Scholar 

  8. Varni JW, Burwinkle TM, Berrin SJ, et al. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Dev Med Child Neurol. 2006;48:442–29.

    Article  PubMed  Google Scholar 

  9. Horsman J, Furlong W, Feeny D, Torrance G. The health utilities index (HUI®): concepts, measurement properties and applications. Health Qual Life Outcomes. 2003;1:54.

    Google Scholar 

  10. Young NL, Gilbert TK, McCormick A, et al. Youth and young adults with cerebral palsy: their use of physician and hospital services. Arch Phys Med Rehabil. 2010;91:143–8.

    Article  PubMed  Google Scholar 

  11. Daltroy L, Liang M, Fossel A, Goldberg M. The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. J Pediatr Orthop. 1998;18:561–71.

    Article  CAS  PubMed  Google Scholar 

  12. Narayanan UG, Fehlings D, Weir S, et al. Initial development and validation of the caregiver priorities and child health index of life with disabilities (CPCHILD). Dev Med Child Neurol. 2006;48:804–12.

    Article  PubMed  Google Scholar 

  13. Waters E, Davis E, Ronen GM, et al. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol. 2009;51:660–9.

    Article  PubMed  Google Scholar 

  14. Wake M, LS BA, Reddihough D. Health status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the child health questionnaire. Dev Med Child Neurol. 2003;45:194–9.

    Article  CAS  PubMed  Google Scholar 

  15. Dickinson HO, Parkinson KN, Ravens-Sieberer U, et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet. 2007;369:2171–8.

    Article  PubMed  Google Scholar 

  16. Bjornson KF, Belza B, Kartin D, et al. Self-reported health status and quality of life in youth with cerebral palsy and typically developing youth. Arch Phys Med Rehabil. 2008;89:121–7.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Jiang B, Walstab J, Reid SM, et al. Quality of life in young adults with cerebral palsy. Disabil Health J. 2016;9:673–81.

    Article  PubMed  Google Scholar 

  18. Murphy KP, Molnar GE, Lankasky K. Employment and social issues in adults with cerebral palsy. Arch Phys Med Rehabil. 2000;81:807–11.

    Article  CAS  PubMed  Google Scholar 

  19. 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 Dev. 2012;38:553–60.

    Article  CAS  PubMed  Google Scholar 

  20. White-Koning M, Grandjean H, Colver A, Arnaud C. Parents and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Dev Med Child Neurol. 2008;50:618–62.

    Article  PubMed  Google Scholar 

  21. Manuel J, Naughton M, Balkrishnan R, et al. Stress and adaptation in mothers of children with cerebral palsy. J Pediatr Psychol. 2003;28:197–201.

    Article  PubMed  Google Scholar 

  22. Whittingham K, Wee D, Sanders MR, Boyd R. Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences. Disabil Rehabil. 2013;35:1447–52.

    Article  PubMed  Google Scholar 

  23. Ones K, Yilmaz E, Cetinkaya B, Caglar N. Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers). Neurorehabil Neural Repair. 2005;19:232–7.

    Article  PubMed  Google Scholar 

  24. Davis E, Shelly A, Waters E, et al. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child Care Health Dev. 2010;36:63–73.

    Article  CAS  PubMed  Google Scholar 

  25. Weber P, Bolli P, Heimgartner N, et al. Behavioral and emotional problems in children and adults with cerebral palsy. Eur J Paediatr Neurol. 2016;20:270–4.

    Article  PubMed  Google Scholar 

  26. Dang VM, Colver A, Dickinson HO, et al. Predictors of participation of adolescence with cerebral palsy: a European multicentered longitudinal study. Res Dev Disabil. 2005;36:551–64.

    Article  Google Scholar 

  27. Brossard-Racine M, Hall N, Majnemer A, et al. Behavioural problems in school age children with cerebral palsy. Eur J Paediatr Neurol. 2012;16:35–41.

    Article  PubMed  Google Scholar 

  28. Law M, Baptiste S, McColl M, et al. The Canadian occupational performance measure: an outcome measure for occupational therapy. Can J Occup Ther. 1990;57:82–7.

    Article  CAS  PubMed  Google Scholar 

  29. Krasny-Pacinia A, Hiebela J, Pauly F, et al. Goal attainment scaling in rehabilitation: a literature-based update. Ann Phys Rehabil Med. 2013;56:212–30.

    Article  Google Scholar 

  30. Bjornson KF, McLaughlin JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol. 2001;5:183–93.

    Article  Google Scholar 

  31. “Just say Hi” videos. Cerebral palsy foundation. http://yourcpf.org/just-say-hi. Accessed 18 Nov 2016.

  32. Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38:457–63.

    Article  CAS  PubMed  Google Scholar 

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Correspondence to Anna McCormick .

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McCormick, A. (2018). Quality of Life. In: Panteliadis, C. (eds) Cerebral Palsy. Springer, Cham. https://doi.org/10.1007/978-3-319-67858-0_33

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  • DOI: https://doi.org/10.1007/978-3-319-67858-0_33

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-67857-3

  • Online ISBN: 978-3-319-67858-0

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