The Journal of Pediatrics
Volume 153, Issue 2 , Pages 158-160, August 2008

Is Cerebral Palsy a Health Problem?

  • Nancy A. Murphy, MD

      Affiliations

    • Corresponding Author InformationReprint requests: Nancy A. Murphy, MD, Department of Pediatrics, University of Utah, 50 North Medical Drive, 2A200 SOM, Salt Lake City, UT 84132.

Department of Pediatrics, University of Utah, Salt Lake City, Utah

Article Outline

Abbreviations: CHQ-PF50, Child Health Questionnaire–Parent Form 50, CP, Cerebral palsy, GMFCS, Gross Motor Function Classification System, HRQOL, Health-related quality of life, ICF, International Classification of Functioning, Disability, and Health, QOL, Quality of life, WHO, World Health Organization

 

The study by Vargus-Adams1 in this issue of The Journal raises several interesting points. Parents of 177 children and adolescents with cerebral palsy (CP) completed the Gross Motor Function Classification System (GMFCS) and the Child Health Questionnaire–Parent Form 50 (CHQ-PF50). As expected, greater activity limitations on the physical functioning subscale of the CHQ-PF50 were associated with more severe motor impairments on the GMFCS for most of the children with CP. Interestingly, however, 12% of respondents reported that although their children were nonambulatory (GMFCS score IV-V), they had “excellent” physical functioning. Apparently, these parents did not consider their children with moderate to severe CP to have a “health problem,” and noted that their children typically were very healthy. Vargus-Adams suggests that these unanticipated responses originated from parents' confusion regarding the meanings of “disability” and “health.” Alternatively, 1 of every 8 parents of children with CP might be telling us that despite significant functional limitations, their children actually have high satisfaction with their lives and are in fact “healthy.” Is it possible that the confusion lies not with the parents of the children with CP, but rather with us clinicians and researchers, who tend to blur the concepts of health, function, and quality of life when considering persons with disabilities? Perhaps we need to examine our own concepts of how we view the health and well-being of children with CP.

See related article, p 199

Health is defined by the World Health Organization (WHO) as not only the absence of illness, but also the presence of physical, mental, and social well-being. It is a positive concept that emphasizes social and personal resources, as well as physical capacities.2 Health status considers the impact of disability.3 Function refers to the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations3; it is inherently linked to activities and participation.2 The WHO defines quality of life (QOL) as a person's perceptions of his or her position in life in the context of the culture and value system in which he or she lives and in relation to his or her goals, expectations, standards, and concerns.4 QOL reflects a person's perception of his or her well-being and satisfaction with life and relates to the processes of being, belonging, and becoming.3 In contrast, health-related quality of life (HRQOL) considers how a person feels about those aspects of his or her life that are directly related to health. HRQOL does not specifically address physical or functional health status, however. To get a complete picture of the well-being of children with disabilities, the sum of their health, function, and QOL merit consideration, because the whole may be greater than the sum of the parts.

The WHO's International Classification of Functioning, Disability and Health (ICF) describes the complex interaction among a person's body structure, function, activity, and participation in a clear framework that also considers personal and environmental factors.2 It recognizes the critical influence of each child's individual physical, social, and attitudinal environment, as well as personal interests and preferences, on the outcomes of activities and participation. It stresses function rather than disease. Thus, the ICF emphasizes that what people do is more important than their ability to do things “normally.”5 The ICF provides a common language and widely accepted framework for social policy, research, education, and clinical practice in the field of childhood disability. It describes, but does not measure, health, functioning, and disability. Currently, there is no single measure for describing a child with a disability according to this ICF framework.6, 7 This is an important area of active research.

Harvey et al8 recently completed a systematic review of measures of activity limitation (function) for children with CP. They identified 8 outcome measures that assess activity limitations in children with CP, including the CHQ. They concluded that each of the measures examines different dimensions, and that no single measure adequately addresses all aspects of the ICF. Measures often overlap in terms of the constructs that they encompass. In their opinion, the CHQ is a generic measure of HRQOL with a physical function subscale that assesses activities and participation; however, it does not capture the personal and environmental aspects of the ICF. Another comparison of outcome measures for children with CP found no significant correlations between CHQ physical function subscale scores and the Functional Independence Measure for Children (WeeFIM) self-care and mobility subscale scores, suggesting that these 2 measures also assess different constructs.9

Although the authors of the CHQ-PF50 describe it as a generic health scale for children,10 others consider it an HRQOL measure.8 However, it appears from the work of Vargus-Adams that the physical functioning subscale of the CHQ-PF50 is an inappropriate measure of the functional status of children with CP. Consider the following question from the CHQ-PF50:

Has your child been limited in any of the following activities due to health problems: doing things that take a lot of energy, such as playing soccer or running; doing things that take some energy, such as riding a bike or skating; ability (physically) to get around the neighborhood, playground, or school; walking one block or climbing one flight of stairs; bending, lifting/stooping; taking care of him/herself?

How would you respond to this question if you had in mind a child with asthma? Asthma exemplifies a health problem that when well controlled may or may not limit a child's activities. If you then consider this same question with reference to a child with spastic quadriplegic CP, how would your response differ? Perhaps, like some parents in Vargas-Adams' study, you might reply that the child is severely limited by his health problem of CP and limited mobility. Conversely, you might comment that the child is healthy and energetic despite his nonambulatory status, that there is no health problem, and that the question thus is not applicable. Survey questions that may have multiple interpretations depending on respondents' viewpoints render assessments that are imprecise and inconsistent over time.11

Some 12% of the respondents in Vargas-Adams' study seem to have interpreted the CHQ survey questions from the perspective of their child's HRQOL. Although intuitively it may seem that health and function would be highly associated with QOL, > 50% of individuals with disabilities report good to excellent QOL even though many outside observers consider their lives undesirable.12 This “disability paradox” adds yet another layer of complexity to our challenges of measuring health, function, and QOL in children with disabilities.

The inconsistencies in physical functioning and the CHQ-PF50 in children with CP as reported by Vargus-Adams highlight the need to assess the health, disability and function of children with CP according to the ICF framework, using discrete definitions and valid and reliable measures that are sensitive to changes over time. A single outcome measure that assesses how individual children with disabilities are globally performing in the context of the ICF would serve as a “report card” and direct our efforts toward maximizing outcomes for children with disabilities.

So, is CP a “health problem”? Currently, CP is defined as a group of motor disorders attributed to nonprogressive disturbances in the developing brain and associated with activity limitations as well as disturbances of sensation, cognition, communication, perception, and/or behavior, and/or by a seizure disorder.13 As Vargas-Adams' study suggests, although CP is a complex and multidimensional condition, it is not universally perceived to be a “health problem.” A single outcome measure to characterize the whole child with CP in the context of his or her environment is needed.

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References 

  1. Vargus-Adams JN. Inconsistencies with physical functioning and the Child Health Questionnaire in children with cerebral palsy. J Pediatr. 2008;153:199–202
  2. World Health Organization. Towards a Common Language for Functioning, Disability and Health: The International Classification of Functioning, Disability and Health (ICF). http://www.who.int/classifications/icf/site/beginners/bg.pdfAccessed March 2, 2008.
  3. Rosenbaum PL, Livingston MH, Palisano RJ, Galuppi BE, Russell DJ. Quality of life and health-related quality of life of adolescents with cerebral palsy. Dev Med Child Neurol. 2007;49:516–521
  4. The World Health Organization Quality of Life Group. Development of the World Health Organization's WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28:551–558
  5. Stewart D, Rosenbaum PL. Applying the WHO's ICF in childhood disability. http://www.canchild.caAccessed March 2, 2008.
  6. US Department of Health and Human ServicesCenters for Disease Control and PreventionNational Center for Health Statistics. International Classification of Functioning, Disability and Health (ICF). http://www.cdc.gov/nchs/about/otheract/icd9/icfhome.htmAccessed March 2, 2008.
  7. Stewart D, Rosenbaum PL. The International Classification of Functioning, Disability, and Health (ICF): a global model to guide clinical thinking and practice in childhood disability. http://www.canchild.caAccessed March 2, 2008.
  8. Harvey A, Robin J, Morris ME, Graham HK, Baker R. A systematic review of measures of activity limitation for children with cerebral palsy. Dev Med Child Neurol. 2008;50:190–198
  9. Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler-Spira DJ. Health-related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol. 2001;43:601–608
  10. Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, et al. Canadian-French, German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results. Qual Life Res. 1998;7:433–445
  11. Saris-Baglama R, Raczek A, DeRosa M, Dumas H, Fragala-Pinkham M, Ware JE. Multiple meanings: how pediatric health survey items are understood by clinicians and parents of children with and without disabilities. Dev Med Child Neurol. 2006;48(Suppl 106):34–35
  12. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48:977–988
  13. Bax M, Goldstein M, Rosenbaum P, et al. Proposed definition and classification of cerebral palsy, April 2005. Dev Med Child Neurol. 2005;47:571–576

PII: S0022-3476(08)00278-3

doi:10.1016/j.jpeds.2008.04.011

Refers to article:

  • Inconsistencies with Physical Functioning and the Child Health Questionnaire in Children with Cerebral Palsy , 10 April 2008

    Jilda N. Vargus-Adams
    The Journal of Pediatrics August 2008 (Vol. 153, Issue 2, Pages 199-202.e1)

The Journal of Pediatrics
Volume 153, Issue 2 , Pages 158-160, August 2008

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