Measuring Outcomes in Children with Cerebral Palsy

  • Colyn J. Watkins
  • Rachel L. DiFazio
  • Benjamin J. ShoreEmail author
Living reference work entry


Cerebral palsy (CP) defines a group of conditions, arising from an injury to the developing brain. This injury results in disturbances of movement and posture, affecting balance, gait, and communication. Reduced activity levels and participation restrictions due to the above impairments may lead to decreased health-related quality of life (HRQOL), compared to unaffected peers. Increasingly, research and clinical practice is focused on interventions not only to improve biomechanical alignment or functional outcomes for children with CP but also to improve HRQOL. Clinicians need to utilize outcome measures that accurately assess HRQOL in children with CP to provide evidence that their interventions and management strategies are positively influencing HRQOL, activity and participation. Outcome measures must be valid, reliable, and responsive to change. No single measure covers all domains relevant to children with CP; therefore, a range of measures is required to assess a child with CP comprehensively. Each outcome tool has specific performance characteristics, some of which are better suited for clinical use and others for research. The purpose of this chapter is to review the most common functional and HRQOL outcomes measures for children with CP to aid providers in their daily practice.


Cerebral palsy Outcome measures Self-report Parent proxy Health-related quality of life Functional outcomes 


  1. Baars RM et al (2005) The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes 3:70CrossRefPubMedPubMedCentralGoogle Scholar
  2. Bates JE et al (1998) Interaction of temperamental resistance to control and restrictive parenting in the development of externalizing behavior. Dev Psychol 34(5):982–995CrossRefPubMedPubMedCentralGoogle Scholar
  3. Beckung E, Hagberg G (2000) Correlation between ICIDH handicap code and Gross Motor Function Classification System in children with cerebral palsy. Dev Med Child Neurol 42(10):669–673CrossRefPubMedGoogle Scholar
  4. Berzon R (1998) Understanding and using health related quality of life instruments within clinical research studies. Oxford University Press, New YorkGoogle Scholar
  5. Cooley ME (1998) Quality of life in persons with non-small cell lung cancer: a concept analysis. Cancer Nurs 21(3):151–161CrossRefPubMedGoogle Scholar
  6. Daltroy LH et al (1998) The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America. J Pediatr Orthop 18(5):561–571CrossRefPubMedGoogle Scholar
  7. Damiano DL et al (2005) Responsiveness and uniqueness of the pediatric outcomes data collection instrument compared to the gross motor function measure for measuring orthopaedic and neurosurgical outcomes in cerebral palsy. J Pediatr Orthop 25(5):641–645CrossRefPubMedGoogle Scholar
  8. Davids JR et al (2006) Validation of the Shriners Hospital for Children Upper Extremity Evaluation (SHUEE) for children with hemiplegic cerebral palsy. J Bone Joint Surg Am 88(2):326–333CrossRefPubMedGoogle Scholar
  9. Davis E et al (2013) Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy. Res Dev Disabil 34(1):344–352CrossRefPubMedGoogle Scholar
  10. Dawson J, Carr A (2001) Outcomes evaluation in orthopaedics. J Bone Joint Surg Br 83(3):313–315CrossRefPubMedGoogle Scholar
  11. DiFazio R et al (2016) Effect of hip reconstructive surgery on health-related quality of life of non-ambulatory children with cerebral palsy. J Bone Joint Surg Am 98(14):1190–1198CrossRefPubMedGoogle Scholar
  12. DiFazio RL et al (2017) Health-related quality of life and care giver burden following spinal fusion in children with cerebral palsy. Spine (Phila Pa 1976) 42(12):E733–E739CrossRefGoogle Scholar
  13. Dumas HM, Fragala-Pinkham MA (2012) Concurrent validity and reliability of the pediatric evaluation of disability inventory-computer adaptive test mobility domain. Pediatr Phys Ther 24(2):171–176CrossRefPubMedGoogle Scholar
  14. Dumas HM et al (2015) Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) and Alberta Infant Motor Scale (AIMS): validity and responsiveness. Phys Ther 95(11):1559–1568CrossRefPubMedGoogle Scholar
  15. Dumas HM et al (2017) Construct validity of the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) in children with medical complexity. Disabil Rehabil 39(23):2446–2451CrossRefPubMedGoogle Scholar
  16. Eiser C, Morse R (2001) The measurement of quality of life in children: past and future perspectives. J Dev Behav Pediatr 22(4):248–256CrossRefPubMedGoogle Scholar
  17. Feldman AB et al (1990) Concurrent and construct validity of the Pediatric Evaluation of Disability Inventory. Phys Ther 70(10):602–610CrossRefPubMedGoogle Scholar
  18. Gorton GE 3rd et al (2011) Gillette functional assessment questionnaire 22-item skill set: factor and Rasch analyses. Dev Med Child Neurol 53(3):250–255CrossRefPubMedGoogle Scholar
  19. Guyatt GH et al (1993) Measuring health-related quality of life. Ann Intern Med 118(8):622–629CrossRefGoogle Scholar
  20. Haley SM et al (2010) Validity and reliability of physical functioning computer-adaptive tests for children with cerebral palsy. J Pediatr Orthop 30(1):71–75CrossRefPubMedGoogle Scholar
  21. Han T et al (2011) Comparison of the GMFM-66 and the PEDI Skills Mobility domain in a group of Chinese children with cerebral palsy. Child Care Health Dev 37(3):398–403CrossRefPubMedGoogle Scholar
  22. Himpens E et al (2013) Quality of life in youngsters with cerebral palsy after single-event multilevel surgery. Eur J Paediatr Neurol 17(4):401–406CrossRefPubMedGoogle Scholar
  23. Jokovic A et al (2004) How well do parents know their children? Implications for proxy reporting of child health-related quality of life. Qual Life Res 13(7):1297–1307CrossRefPubMedGoogle Scholar
  24. Klepper SE (2011) Measures of pediatric function: Child Health Assessment Questionnaire (C-HAQ), Juvenile Arthritis Functional Assessment Scale (JAFAS), Pediatric Outcomes Data Collection Instrument (PODCI), and Activities Scale for Kids (ASK). Arthritis Care Res (Hoboken) 63(Suppl 11):S371–S382CrossRefGoogle Scholar
  25. Majnemer A, Mazer B (2004) New directions in the outcome evaluation of children with cerebral palsy. Semin Pediatr Neurol 11(1):11–17CrossRefPubMedGoogle Scholar
  26. McCarthy ML et al (2002) Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 44(7):468–476CrossRefPubMedGoogle Scholar
  27. McCullough N, Parkes J (2008) Use of the child health questionnaire in children with cerebral palsy: a systematic review and evaluation of the psychometric properties. J Pediatr Psychol 33(1):80–90CrossRefPubMedGoogle Scholar
  28. Mueller-Godeffroy E et al (2016) Health-related quality of life in children and adolescents with cerebral palsy: a secondary analysis of the DISABKIDS questionnaire in the field-study cerebral palsy subgroup. Neuropediatrics 47(2):97–106CrossRefPubMedGoogle Scholar
  29. Murphy AM et al (2008) Impact of modafinil on spasticity reduction and quality of life in children with CP. Dev Med Child Neurol 50(7):510–514CrossRefPubMedGoogle Scholar
  30. Narayanan UG et al (2006) Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Dev Med Child Neurol 48(10):804–812CrossRefPubMedGoogle Scholar
  31. Narayanan U et al (2011) The CPCHILD questionnaire is sensitive to change following scoliosis surgery in children with cerebral palsy. Spine: Affiliated Society Meeting Paper #62, pp 86–87Google Scholar
  32. Novacheck TF et al (2000) Reliability and validity of the Gillette Functional Assessment Questionnaire as an outcome measure in children with walking disabilities. J Pediatr Orthop 20(1):75–81PubMedGoogle Scholar
  33. Oeffinger D et al (2007) Outcome assessments in children with cerebral palsy, part I: descriptive characteristics of GMFCS Levels I to III. Dev Med Child Neurol 49(3):172–180CrossRefPubMedGoogle Scholar
  34. Oeffinger DJ et al (2009) Clinical applications of outcome tools in ambulatory children with cerebral palsy. Phys Med Rehabil Clin N Am 20(3):549–565CrossRefPubMedGoogle Scholar
  35. Ostensjo S et al (2003) Everyday functioning in young children with cerebral palsy: functional skills, caregiver assistance, and modifications of the environment. Dev Med Child Neurol 45(9):603–612CrossRefPubMedGoogle Scholar
  36. Ottenbacher KJ et al (1997) Interrater agreement and stability of the Functional Independence Measure for Children (WeeFIM): use in children with developmental disabilities. Arch Phys Med Rehabil 78(12):1309–1315CrossRefPubMedPubMedCentralGoogle Scholar
  37. Porter ME (2010) What is value in health care? N Engl J Med 363(26):2477–2481CrossRefPubMedPubMedCentralGoogle Scholar
  38. Riley AW (2004) Evidence that school-age children can self-report on their health. Ambul Pediatr 4(4 Suppl):371–376CrossRefPubMedPubMedCentralGoogle Scholar
  39. Rosenbaum P, Stewart D (2004) The World Health Organization international classification of functioning, disability, and health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Semin Pediatr Neurol 11(1):5–10CrossRefPubMedPubMedCentralGoogle Scholar
  40. Rosenbaum P et al (2007) A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 109:8–14Google Scholar
  41. Shelly A et al (2008) The relationship between quality of life and functioning for children with cerebral palsy. Dev Med Child Neurol 50(3):199–203CrossRefPubMedGoogle Scholar
  42. Shore BJ et al (2015) Quality, safety, value: from theory to practice management what should we measure? J Pediatr Orthop 35(5 Suppl 1):S61–S66CrossRefPubMedGoogle Scholar
  43. Shore BJ et al (2017) Evaluating the discriminant validity of the pediatric evaluation of disability inventory: computer adaptive test in children with cerebral palsy. Phys Ther 97(6):669–676CrossRefPubMedGoogle Scholar
  44. Simeoni MC et al (2007) Field testing of a European quality of life instrument for children and adolescents with chronic conditions: the 37-item DISABKIDS Chronic Generic Module. Qual Life Res 16(5):881–893CrossRefPubMedGoogle Scholar
  45. Smitherman JA et al (2011) Functional outcomes following single-event multilevel surgery of the upper extremity for children with hemiplegic cerebral palsy. J Bone Joint Surg Am 93(7):655–661CrossRefPubMedGoogle Scholar
  46. Stout JL et al (2008) Distal femoral extension osteotomy and patellar tendon advancement to treat persistent crouch gait in cerebral palsy. J Bone Joint Surg Am 90(11):2470–2484CrossRefPubMedGoogle Scholar
  47. Taylor RM et al (2008) A concept analysis of health-related quality of life in young people with chronic illness. J Clin Nurs 17(14):1823–1833CrossRefPubMedGoogle Scholar
  48. Testa MA, Simonson DC (1996) Assessment of quality-of-life outcomes. N Engl J Med 334(13):835–840CrossRefPubMedGoogle Scholar
  49. Theunissen NC et al (1998) The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 7(5):387–397CrossRefPubMedGoogle Scholar
  50. Upton P et al (2008) Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 17(6):895–913CrossRefPubMedGoogle Scholar
  51. Varni JW, Limbers CA (2009) The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin N Am 56(4):843–863CrossRefGoogle Scholar
  52. Varni JW et al (2005) Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 3:34CrossRefPubMedPubMedCentralGoogle Scholar
  53. Varni JW et al (2006) The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Dev Med Child Neurol 48(6):442–449CrossRefPubMedGoogle Scholar
  54. Vitale MG et al (2001) Capturing quality of life in pediatric orthopaedics: two recent measures compared. J Pediatr Orthop 21(5):629–635PubMedGoogle Scholar
  55. Vitale MG et al (2005) Assessment of health status in patients with cerebral palsy: what is the role of quality-of-life measures. J Pediatr Orthop 25(6):792–797CrossRefPubMedGoogle Scholar
  56. Vogels T et al (1998) Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 7(5):457–465CrossRefPubMedGoogle Scholar
  57. Wang TJ (2004) Concept analysis of functional status. Int J Nurs Stud 41(4):457–462CrossRefPubMedGoogle Scholar
  58. Waters E et al (2007) Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol 49(1):49–55CrossRefPubMedGoogle Scholar
  59. WHO (2001) ICF: international classification of functioning, disability and health. World Health Organization, GenevaGoogle Scholar
  60. WHO Organization (2010) WHO: international classificationsGoogle Scholar
  61. Wiebe S et al (2003) Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol 56(1):52–60CrossRefPubMedGoogle Scholar
  62. Wilson IB, Cleary PD (1995) Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 273(1):59–65CrossRefPubMedGoogle Scholar
  63. Wren TA et al (2007) Agreement among three instruments for measuring functional health status and quality of life in pediatric orthopaedics. J Pediatr Orthop 27(2):233–240CrossRefPubMedGoogle Scholar
  64. Wright FV, Majnemer A (2014) The concept of a toolbox of outcome measures for children with cerebral palsy: why, what, and how to use. J Child Neurol 29(8):1055–1065CrossRefPubMedGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Colyn J. Watkins
    • 1
  • Rachel L. DiFazio
    • 1
  • Benjamin J. Shore
    • 1
    Email author
  1. 1.Orthopedic CenterBoston Children’s HospitalBostonUSA

Section editors and affiliations

  • Steven J. Bachrach
    • 1
    • 2
  1. 1.Department of Pediatrics (Emeritus)Nemours/Alfred I. duPont Hospital for ChildrenWilmingtonUSA
  2. 2.Sidney Kimmel Medical College of Thomas Jefferson UniversityPhiladelphiaUSA

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