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  • Print publication year: 2011
  • Online publication date: January 2011

9 - Condition-specific instruments to measure the quality of life (QoL) of children and adolescents with cerebral palsy (CP)

References

1. RosenbaumP, PanethN, LevitonA, GoldsteinM, BaxM, DamianoD, DanB, JacobssonB. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol 2007; 109: 8–14.
2. BlairE, WatsonL, BadawiN, StanleyFJ. Life expectancy among people with cerebral palsy in Western Australia. Dev Med Child Neurol 2001; 43: 508–515.
3. WatersE, MaherE, SalmonL, ReddihoughD, BoydR. 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 Hlth Dev 2005; 31(2): 127–135.
4. Rumeau-RouquetteC, GrandjeanH, CansC, du MazaubrumC, VerrierA. Prevalence and time trends of disabilities in school-age children. Int J Epidemiol 1997; 26: 137–145.
5. BrehautJC, KohenDE, RainaP, WalterSD, RussellDJ, SwintonM, O’DonnellM, RosenbaumP. The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics 2004; 114(2): e182–e191.
6. KomanLA, SmithBP, ShiltJS. Cerebral palsy. Lancet 2004; 363(9421): 1619–1631.
7. PalisanoR, RosenbaumP, WalterS, RussellD, WoodE, GaluppiB. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997; 39: 214–223.
8. BoydRN, HaysRM. Current evidence for the use of botulinum toxin type A in the management of children with cerebral palsy: a systematic review. Eur J Neurol 2001; 8: 1–20.
9. Division of Mental Health, World Health Organization. Measuring Quality of Life: The Development of the World Health Organization Quality of Life Instrument (WHOQOL). Geneva, Switzerland: World Health Organization; 1993.
10. BradlynAS, RitcheyAC, HarrisCV, MooreIM, O’BrienRT, ParsonsSK, PattersonK, PollockBH. Quality of life research in pediatric oncology: research methods and barriers. Cancer 1996; 78: 1333–1339.
11. RonenGM, RosenbaumP, LawM. Health-related quality of life in childhood disorders: a modified focus group technique to involve children. Qual Life Res 2001; 10: 71–79.
12. CumminsRA, EckersleyR, PallantJ, MisajonR. Developing a national index of subjective wellbeing: the Australian Unity Wellbeing Index. Soc Indic Res 2004; 64(2): 159–190.
13. IrrgangJJ, AndersonAF. Development and validation of health-related quality of life measures of the knee. Clin Orthop 2002; 1: 95–109.
14. SpilkerB, RevickiDA. Taxonomy of quality of life, In: Spilker B, ed. Quality of Life and Pharmacoeconomics. Philadelphia: Lippincott-Raven, 1996; 25–31.
15. BjornsonKF, McLaughlinJF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol 2001; 8: 183–193.
16. Vargus-AdamsJ. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil 2005; 86(5): 940–945.
17. VarniJW, BurwinkleTM, ShermanSA, HannaK, BerrinSJ, MalcarneVL, ChambersHG. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol 2005; 47(9): 592–597.
18. HodgkinsonI, d’AnjouMC, DazordA, BerardC. Quality of life of a population of 54 ambulatory children with cerebral palsy: a cross-sectional study. Ann Readaptation Med Physique 2002; 45(4): 154.
19. TüzünE, EkerL, DaskapanA. An assessment of the impact of cerebral palsy on children's quality of life. Fizyoterapi Rehabilitasyon 2004; 15(1): 3–8.
20. DickinsonHO, ParkinsonKN, Ravens-SiebererU, SchirripaG, ThyenU, ArnaudC, BeckungE, FauconnierJ, McManusV, MichelsenSI, ParkesJ, ColverAF. Self-reported quality of life of 8–12-year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007; 369(9580): 2171–2178.
21. ShellyA, DavisE, WatersE. Measuring the quality of life (QOL) of children with cerebral palsy (CP): comparing the conceptual underpinnings and psychometric properties of three instruments. Dev Med Child Neurol (Submitted Oct 2007).
22. WatersE, DavisE, BoydR, ReddihoughD, GrahamHK, MackinnonA, LoSK, WolfeR, StevensonR, BjornsonK, BlairE, HoareP, Ravens-SiebererU. Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL – Child): psychometric properties of parent proxy questionnaire. Dev Med Child Neurol 2007; 49 (1): 49–55.
23. ShellyA, DavisE, WatersE, MackinnonA, ReddihoughD, BoydR, et al. The relationship between quality of life (QOL) and functioning for children with cerebral palsy: does poor functioning equate with poor QOL? Dev Med Child Neurol 2007; 50(3): 199–203.
24. PirpirisM. Function and well-being in ambulatory children with cerebral palsy. J Pediatr Orthop 2006; 26(1): 119–124.
25. GerharzEW, EiserC, WoodhouseCRJ. Current approaches to assessing the quality of life in children and adolescents. BJU International 2003; 91: 150–154.
26. PiagetJ. The Child's Conception of the World. New York: Harcourt, Brace Jovanovich, 1929.
27. EiserC, MorseR. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001; 10: 347–357.
28. DavisE, NicolasC, WatersE, CookK, GibbsL, GoschA, Ravens-SiebererU. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 2007; 16(5): 863–871.
29. BaarsRM, AthertonCI, KoopmanHM, BullingerM, PowerM. 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.
30. NarayananUG, FehlingsD, WeirS, KnightsS, KiranS, CampbellK. Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Dev Med Child Neurol 2006; 48(10): 804–812.
31. VarniJW, BurwinkleTM, BerrinSJ, ShermanSA, ArtaviaK, MalcarneVL, ChambersHG. 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(6): 442–449.
32. DavisE, WatersE, MackinnonA, ReddihoughD, GrahamHK, Mehmet-RadjiO, BoydR. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006; 48: 311–318.
33. ReidS, LaniganA, AlstabJ, ReddihoughD. Third Report of the Victorian Cerebral Palsy Register. Melbourne: Department of Child Development and Rehabilitation, Murdoch Childrens Research Institute, Royal Children's Hospital; 2005.
34. Ravens-SiebererU, GoschA, RajmilL, ErhartM, BruilJ, DuerW, AuquierP, PowerM, AbelT, CzemyL, MazurJ, CzimbalmosA, TountasY, HagquistC, KilroeJ. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoeconomics Outcomes Res 2005; 5(3): 353–356.
35. LandgrafJM, AbetzL, WareJA. The CHQ User's Manual. First edition. Boston: The Health Institute, New England Medical Centre, 1996.