SEARCH

SEARCH BY CITATION

Abstract

  1. Top of page
  2. Abstract
  3. References

This study sought to describe change and stability in health-related quality of life (HRQL) over time in a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire (CHQ) through repeated surveys of the children's parents/caregivers. A total of 177 children with CP (98 males, 79 females); age range 3 to 18 years (mean age 8y 6mo, [SD 4y 2mo]; Gross Motor Function Classification System: Level I 40%, Level II 14%, Level III 14%, Level IV 16%, and Level V 17%) were enrolled as a convenience sample from the outpatient clinics at a tertiary-care children's hospital. The main outcome measure was HRQL as determined by the CHQ — Parent Form 50. Parents reported reduced HRQL for their children with CP relative to norms for the CHQ. Although Role — Physical functioning (reflecting how physical impairment interferes with daily activity) declined with time, all other subscales of the CHQ were stable over the course of 1 year. CHQ scores were not measurably affected by common medical interventions. Children with CP have lower CHQ scores than other children that are, on average, stable over the course of 1 year.

List of abbreviations:
CHQ

Child Health Questionnaire

HRQL

Health-related quality of life

PF50

Parent Form 50

References

  1. Top of page
  2. Abstract
  3. References
  • Bax M. (1964) Terminology and classification of cerebral palsy. Dev Med Child Neurol 6: 295297.
  • Bhushan V, Paneth N, Kiely JL. (1993) Impact of improved survival of very low birthweight infants on recent secular trends in the prevalence of cerebral palsy. Pediatrics 91: 10941100.
  • Bjornson KF, McLaughlin JF. (2001) The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol 8 (Suppl. 5): 183193.
  • Boyd RN, Hays RM. (2001) Outcome measurement of effectiveness of botulinum toxin type A in children with cerebral palsy: an ICIDH-2 approach. Eur J Neurol 8 (Suppl. 5): 167177.
  • Hyman JE, Vitale MG, Choe JC, Roye DP. (2000) Assessment of health status in patients with cerebral palsy: what is the role of quality of life measures Dev Med Child Neurol 45: 41. (Abstract).
  • Kennes J, Rosenbaum P, Hanna SE, Walter S, Russell D, Raina P, Bartlett D, Galuppi B. (2002) Health status of school-aged children with cerebral palsy: information from a population-based sample. Dev Med Child Neurol 44: 240247.
  • Landgraf JM, Abetz L, Ware JE. (1996) The CHQ User's Manual, 1st edn. Boston , MA : The Health Institute, New England Medical Center.
  • Liptak GS, O'Donnell M, Conaway M, Chumlea WC, Worley G, Henderson RC, Fung E, Stallings VA, Samson-Fang L, Calvert R, Rosenbaum P, Stevenson RD. (2001) Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 43: 364370.
  • McCarthy ML, Silberstein CE, Atkins EA, Harryman SE, Sponseller PD, Hadley-Miller NA. (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: 468476.
  • Palisano R, Cameron D, Rosenbaum P, Walter S, Russell D. (2004) Stability of the Gross Motor Function Classification System. Dev Med Child Neurol 46 (Suppl. 99): 45. (Abstract).
  • Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. (1997) Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 39: 214223.
  • Panepinto JA, O'Mahar KM, DeBaun MR, Rennie KM, Scott JP. (2004) Validity of the child health questionnaire for use in children with sickle cell disease. J Pediatr Hematol Oncol 26: 574578.
  • Perwien AR, Faries DE, Kratochvil CJ, Sumner CR, Kelsey DK, Allen AJ. (2004) Improvement in health-related quality of life in children with ADHD: an analysis of placebo controlled studies of atomoxetine. J Dev Behav Pediatr 25: 264271.
  • Powers PM, Gerstle R, Lapey A. (2001) Adolescents with cystic fibrosis: family reports of adolescent health-related quality of life and forced expiratory volume in one second. Pediatrics 107: E70.
  • Rosenbaum PL, Walter SD, Hanna SE, Palisano RJ, Russell DJ, Raina P, Wood E, Bartlett DJ, Galuppi BE. (2002) Prognosis for gross motor function in cerebral palsy: creation of motor development curves. JAMA 288: 13571363.
  • Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, Maldonado-Velazquez MR, Beristain-Manterola R, Maeno N, Takei S, Falcini F, Lepore L, Spencer CH, Pratsidou-Gertsi P, Martini A, Ravelli A. (2004) Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 51: 458464.
  • Sawyer MG, Reynolds KE, Couper JJ, French DJ, Kennedy D, Martin J, Staugas R, Ziaian T, Baghurst PA. (2004) Health-related quality of life of children and adolescents with chronic illness — a two-year prospective study. Qual Life Res 13: 13091319.
  • Schipper H, Clinch JJ, Olweny CLM. (1996) Quality of life studies: definitions and conceptual issues. In: SpilkerB, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia : Lippincott-Raven Publishers. p 1123.
  • Vargus-Adams JN. (2005) Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil 86: 940945.
  • Wake M, Hesketh K, Cameron F. (2000) The Child Health Questionnaire in children with diabetes: cross-sectional survey of parent and adolescent-reported functional health status. Diabet Med 17: 700707.
  • Wake M, Salmon L, Reddihough D. (2003) Health status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol 45: 194199.
  • Waters E, Salmon L, Wake M. (2000a) The parent-form Child Health Questionnaire in Australia: comparison of reliability, validity, structure, and norms. J Pediatr Psychol 25: 381391.
  • Waters E, Salmon L, Wake M, Hesketh K, Wright M. (2000b) The Child Health Questionnaire in Australia: reliability, validity and population means. Aust N Z J Public Health 24: 207210.
  • Wood E, Rosenbaum P. (2000) The gross motor function classification system for cerebral palsy: a study of reliability and stability over time. Dev Med Child Neurol 42: 292296.