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Quality of life in children and adolescents with cerebral palsy: a systematic review with meta-analysis

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Pages 299-308 | Received 15 Nov 2018, Accepted 22 May 2019, Published online: 10 Jun 2019

References

  • Eunson P. Aetiology and epidemiology of cerebral palsy. J Paediatr Child Health. 2016;26:367–372.
  • Oskoui M, Coutinho F, Dykeman J. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55:509–519.
  • WHOQOL Group. The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41:1403–1409.
  • Arnaud C, White-Koning M, Michelsen SI, et al. Parent-reported quality of life of children with cerebral palsy in Europe. Paediatrics. 2008;54:121.
  • Rapp M, Eisemann N, Arnaud C, et al. Predictors of parent-reported quality of life of adolescents with cerebral palsy: a longitudinal study. Res Devel Disabil. 2017;62:259–270.
  • Dijkers M. Individualization in quality of life measurement: instruments and approaches. Arch Phys Med Rehabil. 2003;84:S3–S14.
  • Davis E, Waters E, Mackinnon A, et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol. 2006;48:311–318.
  • Gilson KM, Davis E, Reddihough D, et al. Quality of life in children with cerebral palsy: implications for practice. J Child Neurol. 2014;29:1134–1140.
  • Davis E, Shelly A, Waters E, et al. 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.
  • McCullough N, Parkes J. Use of the Child Health Questionnaire in children with cerebral palsy: a systematic review and evaluation of the psychometric properties. J Pediatr Psychol. 2008;33:80–90.
  • Cummins RA. Proxy responding for subjective well-being: a review. Int Rev Res Ment Retard. 2002;25:183–207.
  • Piazza B, Hennrikus W, Schell R, et al. The factors most important for quality of life in children and adolescents with cerebral palsy. J Pediatr Neurol Med. 2016;1:1–4.
  • Jardine J, Glinianaia SV, McConachie H, et al. Self-Reported quality of life of young children with conditions from early infancy: a systematic review. Pediatrics. 2014;134:e1129–e1148.
  • Pena ED, Spaulding TJ, Plant E. The composition of normative groups and diagnostic decision making: shooting ourselves in the foot. Am J Speech Lang Pathol. 2006;15:247–254.
  • Power R, King C, Muhit M, et al. Health-related quality of life of children and adolescents with cerebral palsy in low – and middle – income countries: a systematic review. Dev Med Child Neurol. 2018;60:469–479.
  • Sankar C, Mundkur N. Cerebral palsy – definition, classification, etiology and early diagnosis. Indian J Pediatr. 2005;72:865–868.
  • Lipsey MW, Wilson DB. Practical meta-analysis. Thousand Oaks, California: Sage Publications; 2001.
  • Ferguson CH. An effect size primer: a guide for clinicians and researchers. Prof Psychol Res Pr. 2009;40:532–538.
  • Balshem H, Stevens A, Ansari M, et al. Finding grey literature evidence and assessing for outcome and analysis reporting biases when comparing medical interventions: AHRQ and the Effective Health Care Program. Methods Guide for Comparative Effectiveness Reviews. 2013; [cited 2019 May 28]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK174882/pdf/Bookshelf_NBK174882.pdf
  • Juni P, Holenstein F, Sterne J, et al. Direction and impact of language bias in meta-analyses of controlled trials: Empirical Study. Int J Epidemiol. 2002;31:115–123.
  • Beckung E, White-Koning M, Marcelli M, et al. Health status of children with cerebral palsy living in Europe: a multi-centre study. Child Care Health Devel. 2008;34:806–814.
  • Colver A, Rapp M, Eisemann N, et al. Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. Lancet. 2015;385:705–716.
  • *Dickinson HO, Parkinson KN, Ravens-Sieberer U, et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet. 2007;369:2171–2178.
  • Mezgebe M, Gileh-Gol A-D, Streiner DL, et al. Quality of life in children with epilepsy: how does it compare with the quality of life in typical children and children with cerebral palsy. Epilepsy Behav. 2015; 52:239–243.
  • Parkes J, White-Koning M, O Dickinson H, et al. Psychological problems in children with cerebral palsy: a cross-sectional European study. J Child Psychol Psychiatry. 2008;49:405–413.
  • McCullough N, Parkes J, Kerr C, et al. The health of children and young people with cerebral palsy: a longitudinal, population-based study. Int J Nurs Stud. 2013;50:747–756.
  • *Varni JW, Burwinkle TM, Berrin SJ, et al. The PedsQL™ in pediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Dev Med Child Neurol. 2006;48:442–449.
  • Varni JW, Burwinkle TM, Sherman SA, et al. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol. 2005;47:592–597.
  • Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilising the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43.
  • Bjornson KF, Belza B, Kartin D, et al. Amulatory physical activity performance in youth with cerebral palsy and youth who are developing typically. Phys Ther. 2007;87:248–257.
  • *Bjornson KF, Belza B, Kartin D, et al. 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.
  • Janssen CGC, Voorman JM, Becher JG, et al. Course of health-related quality of life in 9–16-year-old children with cerebral palsy: associations with gross motor abilities and mental health. Disabil Rehabil. 2010;32:344–351.
  • *Tan SS, van Meeteren J, Ketelaar M, et al. Long-term trajectories of health-related quality of life in individuals with cerebral palsy: a multicenter longitudinal study. Arch Phys Med Rehabil. 2014;95:2029–2039.
  • Maher CA, Olds T, Williams MT, et al. Self-reported quality of life in adolescents with cerebral palsy. Phys Occup Ther Pediatr. 2008;28:41–57.
  • *Russo RN, Goodwin EJ, Miller MD, et al. Self-esteem, self-concept, and quality of life in children with hemiplegic cerebral palsy. J Pediatr. 2008;153:473–477.
  • Moher D, Liberati A, Tetzlaff J. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med. 2009;151:264–269.
  • *Calley A, Williams S, Reid S, et al. A comparison of activity, participation and quality of life in children with and without spastic diplegia cerebral palsy. Disabil Rehabil. 2012; 34:1306–1310.
  • *Du RY, McGrath C, Yiu CKY, et al. Health- and oral health-related quality of life among preschool children with cerebral palsy. Qual Life Res. 2010; 19:1367–1371.
  • *Tuzun EH, Eker L, Daskapan A. An assessment of the impact of cerebral palsy on children’s quality of life. Fizyoter Rehabil. 2014;15:3–8.
  • *Vinson J, Shank L, Thomas PD, et al. Self-generated domains of quality of life in children with and without cerebral palsy. J Dev Phys Disabil. 2010;22:497–508.
  • *Vles G, Hendriksen R, Hendriksen J, et al. Quality of life of children with cerebral palsy: a cross-sectional KIDSCREEN study in the southern part of the Netherlands. CNS Neurol Disord Drug Targets. 2015;14:102–109.
  • *Wake M, BA LS, Reddihough D. Health status of Australian children with mild to severe cerebral palsy: Cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol. 2007;45:194–199.
  • Cohen J. Weighted kappa: nominal scale agreement with provision for scaled disagreement or partial credit. Psychol Bull. 1968;70:213–220.
  • Kmet LM, Lee RC, Cook LS. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Edmonton: Alberta Heritage Foundation for Medical Research (AHFMR); 2004.
  • Hedges LV, Olkin I. Statistical methods for meta-analysis. Orlando: Academic Press; 1985.
  • Borenstein M, Hedges LV, Higgins JPT, et al. Introduction to meta-analysis. Chichester: John Wiley & Sons, Ltd; 2009.
  • Cohen J. Statistical power analysis for the behavioural sciences. 2nd ed. Hillsdale, NJ: Erlbaum; 1988.
  • Cumming G. Understanding the new statistics: effect sizes, confidence intervals, and meta-analysis. New York (NY): Taylor & Francis; 2012.
  • Higgins JPT, Green S. Cochrane handbook for systematic reviews of interventions. Hoboken: John Wiley & Sons, Incorporated; 2008.
  • Shevell MI. Classifying cerebral palsy subtypes. Future Neurol. 2010;5:765–775.
  • Mpundu-Kaambwa C, Chen G, Huynh E, et al. A review of preference-based measures for the assessment of quality of life in children and adolescents with cerebral palsy. Qual Life Res. 2018;27:1781–1799.
  • Orwin RG. A fail-safe N for effect size in meta-analysis. J Stat Educat. 1983;8:157–159.
  • Waters E, Maher E, Salmon L, et al. 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.
  • Romeo DM, Sini F, Brogna C. Sex differences in cerebral palsy on neuromotor outcome: a critical review. Dev Med Child Neurol. 2016;8:809–813.
  • Reid SM, Carlin JB, Reddihough DS. Using the Gross Motor Function Classification System to describe patterns of motor severity in cerebral palsy. Dev Med Child Neurol. 2011;53:1007–1012.
  • Logan DE, Claar RL, Scharff L. Social desirability response bias and self-report of psychological distress in pediatric chronic pain patients. Pain. 2008;136:366–372.
  • Davis E, Mackinnon A, Waters E. Parent proxy-reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress? Child Care Health Dev. 2012;38:553–560.
  • White-Koning M, Grandjean H, Colver A, et al. Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Dev Med Child Neurol. 2008;50:618–624.
  • Bourke-Taylor HM, Cotter C, Lalor A, et al. School success and participation for students with cerebral palsy: a qualitative study exploring multiple perspectives. Disabil Rehabil. 2018;40:2163–2171.
  • Wright Roberts R, Bowman G, et al. Barriers and facilitators to physical activity participation for children with physical disability: comparing and contrasting the views of children, young people, and their clinicians. Disabil Rehabil. 2018;
  • Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire (CHQ): A user’s manual. 2nd ed. Boston: New England Medical Center; 1999.
  • Wagner J. Acceptability of the Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW) in youth with type 1 diabetes. Qual Life Res. 2004;13:1279–1285.
  • Dunn DS, Uswatte G, Elliott TR, et al. A positive psychology of physical disability: principles and progress. In: Wehmeyer ML, editor. The oxford handbook of positive psychology and disability. New York (NY): Oxford University Press; 2013. p. 427–439.
  • Hart A, Heaver B, Brunnberg E, et al. Resilience-building with disabled children and young people: a review and critique of the academic evidence base. Int J Child Youth Family Stud. 2014;5:394–422.
  • Türkoglu S, Bilgic A, Türkoglu G, et al. Quality of life and related factors in child and adolescents with cerebral palsy. Eur Psychiatry. 2015;30:28–31.
  • Radsel A, Osredkar D, Neubauer D. Health-related quality of life in children and adolescents with cerebral palsy. Zdr Varst. 2017;56:1–10.
  • Feldman MA, Battin SM, Shaw OA, et al. Inclusion of children with disabilities in mainstream child development research. Disabil Soc. 2013; 28:997–1011.
  • Riley RD, Lambert PC, Abo-Zaid G. Meta-analysis of individual participant data: rationale, conduct and reporting. BMJ. 2010; 340:c221.

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