Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning

Disability and Rehabilitation

Volumn 33, Issue 15-16, 2011, Pages 1330-1339

  Schiariti, Veronica ^a   Fayed, Nora ^b   Cieza, Alarcos ^c   Klassen, Anne ^b   O'Donnell, Maureen ^a  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

^c UNIVERSITY OF MUNICH   (Germany)

Author keywords

Cerebral palsy; health related quality of life; ICF CY

Indexed keywords

ADOLESCENT; ADULT; CANADA; CEREBRAL PALSY; CHILD; CLASSIFICATION; COMPARATIVE STUDY; DAILY LIFE ACTIVITY; DISABILITY; FEMALE; HUMAN; INTERNATIONAL CLASSIFICATION OF DISEASES; MALE; PRESCHOOL CHILD; PSYCHOMETRY; QUALITY OF LIFE; REVIEW; SICKNESS IMPACT PROFILE;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; BRITISH COLUMBIA; CEREBRAL PALSY; CHILD; CHILD, PRESCHOOL; DISABILITY EVALUATION; FEMALE; HUMANS; INTERNATIONAL CLASSIFICATION OF DISEASES; MALE; PSYCHOMETRICS; QUALITY OF LIFE; SICKNESS IMPACT PROFILE; YOUNG ADULT;

EID: 79959477390     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.3109/09638288.2010.531371     Document Type: Article

References (36)

1. The definition and classification of cerebral palsy. Dev Med Child Neurol 2007;49:1-44.
2. Kuban KC, Leviton A. Cerebral palsy. N Engl J Med 1994;330:188-195. (Pubitemid 24026889)
3. Odding E, Roebroeck ME, Stam HJ. The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disabil Rehabil 2006;28:183-191. (Pubitemid 43250489)
4. Arnaud C, White-Koning M, Michelsen SI, Parkes J, Parkinson K, Thyen U, Beckung E, Dickinson HO, Fauconnier J, Marcelli M, McManus V, Colver A. Parent-reported quality of life of children with cerebral palsy in europe. Pediatrics 2008;121:54-64.
5. Bjornson KF, Belza B, Kartin D, Logsdon RG, McLaughlin J. Self-reported health status and quality of life in youth with cerebral palsy and typically developing youth. Arch Phys Med Rehabil 2008;89:121-127. (Pubitemid 350298994)
6. Davis E, Waters E, Mackinnon A, Reddihough D, Boyd R, Graham HK. Quality of life of children with CP: conditionspecific instrument and proxy reports. Dev Med Child Neurol 2008;50:167. (Pubitemid 351285384)
7. Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Colver AF. Self- reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional european study. Lancet 2007;369: 2171-2178. (Pubitemid 46992753)
8. Livingston MH, Rosenbaum PL, Russell DJ, Palisano RJ. Quality of life among adolescents with cerebral palsy: what does the literature tell us? Dev Med Child Neurol 2007;49: 225-231. (Pubitemid 46729888)
9. Maher CA, Olds T, Williams MT, Lane AE. Self-reported quality of life in adolescents with cerebral palsy. Phys Occup Ther Pediatr 2008;28:41-57.
10. 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. (Pubitemid 47018498)
11. Sparkes J, Hall D. Quality of life in children with cerebral palsy. Lancet 2007;370:656. (Pubitemid 47285314)
12. Sullivan E, Barnes D, Linton JL, Calmes J, Damiano D, Oeffinger D, Abel M, Bagley A, Gorton G, Nicholson D, Rogers S, Tylkowski C. Relationships among functional outcome measures used for assessing children with ambulatory CP. Dev Med Child Neurol 2007;49:338-344. (Pubitemid 46730684)
13. Davis E, Waters E, Mackinnon A, Reddihough D, Graham HK, Mehmet-Radji O, Boyd R. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006;48: 311-318.
14. World Health Organization (WHO). International classification of functioning, disability and health (ICF): children and youth version ICF-CY. Geneva: World Health Organization; 2007.
15. Cieza A. Linking health-status measurements to the international classification of functioning, disability and health. J Rehabil Med 2002;34(5):205.
16. Cieza A. ICF linking rules: an update based on lessons learned. J Rehabil Med 2005;37:212.
17. Fava L, Muehlan H, Bullinger M. Linking the DISABKIDS modules for health-related quality of life assessment with the international classification of functioning, disability and health (ICF). Disabil Rehabil 2009;31:1943-1954.
18. Fayed N, Kerr EN. Comparing quality of life scales in childhood epilepsy: what's in the measures? Inter J Disabil Commun Rehabil 2009;8:3.
19. Cohen J. A coefficient of agreement for nominal scales. Educ. Psychol. Meas. 1960;20:37-46.
20. Narayanan UG, Fehlings D, Weir S, Knights S, Kiran S, Campbell K. Initial development and validation of the caregiver priorities and child health index of life with disabilities (CPCHILD). Dev Med Child Neurol 2006;48: 804-812. (Pubitemid 44425686)
21. 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 Dev 2005;31:127-135. (Pubitemid 40361040)
22. Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M; DISABKIDS group. 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 2005;3:70.
23. Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. DevMed Child Neurol 2006;48:442-449. (Pubitemid 43740904)
24. 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. (Pubitemid 32842532)
25. Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, Ware JE. Canadian-french, german and UK versions of the child health questionnaire: methodology and preliminary item scaling results. Qual Life Res 1998;7: 433-445. (Pubitemid 28343452)
26. 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.
27. Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006;24:1199-1220. (Pubitemid 44901676)
28. Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Quality of life from the perspective of adolescents with cerebral palsy: "I just think I'm a normal kid, I just happen to have a disability''. Qual Life Res 2009;18:825-832.
29. Kennes J, Rosenbaum P, Hanna SE, Walter S, Russell D, Raina P, Bartlett D, Galuppi B. Health status of school-aged children with cerebral palsy: information from a populationbased sample. Dev Med Child Neurol 2002;44:240-247. (Pubitemid 34406513)
30. Koman LA, Smith BP, Shilt JS. Cerebral palsy. Lancet 2004;363:1619-1631. (Pubitemid 38625667)
31. Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol 2002;44:309-163.
32. Armstrong RW, Rosenbaum PL, King SM. A randomized controlled trial of a 'buddy' programme to improve children's attitudes toward the disabled. Dev Med Child Neurol 1987; 29:327-336. (Pubitemid 17073447)
33. Rosenbaum PL, Armstrong RW, King SM. Parental attitudes toward children with handicaps: new perspectives with a new measure. J Dev Behav Pediatr 1987;8:327-334.
34. Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol 2009;51:660-669.
35. 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. Dev Med Child Neurol 2010;52:174-180.
36. Solans M, Pane S, Estrada MD, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2007;4:742-764.