Participation in everyday activities and quality of life in pre-teenage children living with cerebral palsy in South West Ireland

Vicki Mc Manus, Paul Corcoran, Ivan J Perry, Vicki Mc Manus, Paul Corcoran, Ivan J Perry

Abstract

Background: Cerebral palsy (CP) is the most common cause of physical disability in children but its impact on quality of life is not well understood. This study examined participation in everyday activities among children without CP and children with mild, moderate and severe impairment due to CP. We then examined ten domains of quality of life in children with CP and investigated whether participation in everyday activities was associated with improved quality of life independent of gender, age and level of impairment.

Methods: This was a cross-sectional study of children aged 8-12 years based on two questionnaires, frequency of participation (FPQ) and KIDSCREEN, completed by parents of 98 children on the South of Ireland Cerebral Palsy Register (response rate = 82%) and parents of 448 children attending two Cork city schools (response rate = 69%) who completed one questionnaire (FPQ). Multiple linear regression was used: firstly to estimate the effect of severity of CP on participation in everyday activities independent of age and gender and secondly we estimated the effect of participation on quality of life independent of age gender and level of impairment.

Results: Participation in 11 of the 14 everyday activities examined varied across the children without CP and the children with varying severity of CP. In general, increased impairment decreased participation. Independent of age and gender, there was a highly significant decrease in overall participation with a fall of -6.0 (95% CI = -6.9 to -5.2) with each increasing level of impairment. The children with CP generally had high quality of life. Increased impairment was associated with diminished quality of life in just two domains - Physical well-being and Social support and peers. Overall participation in everyday activities was significantly associated with quality of life in 3 of the 10 domains (Physical well-being, Social support and peers & Moods and emotions) in analysis adjusted for gender age and level of impairment.

Conclusion: While increased impairment due to CP restricts participation in the majority of everyday activities, the level of participation has a limited effect on the quality of life of the children with CP in age 8-12 years.

Figures

Figure 1
Figure 1
Box-plots of the 10 quality of life domains in 98 children with CP aged 8–12 years.

References

    1. Cans C. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Dev Med Child Neurol. 2000;42:816–824.
    1. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, Dan B, Jacobsson B. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8–14.
    1. Voorman JM, Dallmeijer AJ, Schuengel C, Knol DL, Lankhorst GJ, Becher JG. Activities and Participation of 9- to 13-year old children with cerebral palsy. Clinical Rehabilitation. 2006;20:937–948. doi: 10.1177/0269215506069673.
    1. Cans C. Prevalence and characteristics of children with cerebral palsy in Europe. Dev Med Child Neurol. 2002;44:633–640.
    1. Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Colver A. Self-reported quality of life of 8–12 year old children with cerebral palsy: a cross-sectional European study. Lancet. 2007;369:2171–2178. doi: 10.1016/S0140-6736(07)61013-7.
    1. Michelsen SI, Flachs EM, Uldall P, Eriksen EL, McManus V, Parkes J, Arnaud C, Parkinson K, Thyen U, Beckung E, Dickinson H, Fauconnier J, Marcelli M, Colver A. Frequency of participation of 8–12 year old children with cerebral palsy; a multi-centre cross sectional European study. European Journal of Paediatric Neurology. 2008
    1. World Health Organisation . International classification of functioning, disability and health. World Health Organisation, Geneva; 2001.
    1. Schenker R, Coster WJ, Parush S. Participation and activity performance of students with cerebral palsy within the school environment. Disabil Rehabil. 2005;27:539–552. doi: 10.1080/09638280400018437.
    1. Morris C, Kurinczuk JJ, Fitzpatrick R. Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review. Child: Care, Health & Dev. 2005;31:397–407. doi: 10.1111/j.1365-2214.2005.00519.x.
    1. Finn JD. Withdrawing from school. Review of Educational research. 1989;59:117–142.
    1. McConachie H, Colver AF, Forsyth RJ, Jarvis SN, Parkinson K. Participation of disabled children: how it should be characterized and measured? Disability and Rehabilitation. 2006;28:1157–1164. doi: 10.1080/09638280500534507.
    1. Kirchner CE, Gerber EG, Smith BC. Designed to deter. Community barriers to physical activity for people with visual or motor impairments. Am J Prev Med. 2008;34:349–52. doi: 10.1016/j.amepre.2008.01.005.
    1. Heah T, Case T, McGuire B, Law M. Successful participation: the lived experience among children with disabilities. Can J Occup Ther. 2007;74:38–47.
    1. Law M, King G, King S, Kertoy M, Hurley P, Rosenbaum P, Young N, Hanna S. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol. 2006;48:337–342. doi: 10.1017/S0012162206000740.
    1. King G, Law M, King S, Hurley P, Hanna S, Kertoy M, Rosenbaum P, Young N. Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC) San Antonio. Harcourt Assessment; 2004.
    1. Colver AF, Sethumadhavan T. The Term diplegia should be abandoned. Arch Dis Child. 2003;88:286–90. doi: 10.1136/adc.88.4.286.
    1. Colver AF. 'A shared framework and language for childhood disability'. Dev Med Child Neurol. 2005;47:780–784. doi: 10.1017/S0012162205001635.
    1. Bullinger M, Schmidt S, Peterson C. DISABKIDS group assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil res. 2002;25:197–206. doi: 10.1097/00004356-200209000-00005.
    1. 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 the parents and children. Child Health Care and Dev. 2005;31:127–135. doi: 10.1111/j.1365-2214.2004.00476.x.
    1. Bjornson KF, Mc Laughlin J. The measurement of health related quality of life in children with cerebral palsy. Eur J Neurol. 2001;8:183–193. doi: 10.1046/j.1468-1331.2001.00051.x.
    1. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, Auquier P, Power M, Abel T, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J, the European KIDSCREEN Group KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research. 2005;5:353–364. doi: 10.1586/14737167.5.3.353.
    1. Detmar SB, Bruil J, Ravens-Sieberer U, Gosch A, Bisegger C. The Use of Focus Groups in the Development of the KIDSCREEN HROL Questionnaire. Qual Life Res. 2006
    1. Fougeyrollas P, Noreau L, Bergeron H, Cloutier R, Dion SA, St-Michel G. 'Social consequences of long term impairments and disabilities: conceptual approach and assessment of handicap'. International Journal of Rehabilitation Research. 1998;21:127–141. doi: 10.1097/00004356-199806000-00002.
    1. Lepage C, Noreau L, Bernard PM, Fougeyrollas P. Profile of handicap situations in children with cerebral palsy. Scand J Rehabil Med. 1998;30:263–272. doi: 10.1080/003655098444011.
    1. Palisano RJ, Hanna SE, Rosenbaum PL, Russell DJ, Walter SD, Wood EP, Raina PS, Galuppi BE. Validation of a model of gross motor function for children with cerebral palsy. Phys Ther. 2000;80:974–985.
    1. Cronbach LJ. Coefficent alpha and the internal structure of tests. Psychometrika. 1951;16:297–334. doi: 10.1007/BF02310555.
    1. Pallant J. SPSS Survival manual – A step by step guide to data analysis using SPSS. Open University Press Buckingham; 2001.
    1. Beckung E, Hagberg G. Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol. 2002;44:309–316. doi: 10.1017/S0012162201002134.
    1. Palisano R, Rosenbaum PL, Walter SD, Russell DJ, Wood E, Galuppi BE. The Gross Motor Function Classification System for cerebral palsy. Dev Med Child Neurol. 1997;39:214–23.
    1. Tisdall K. National contexts affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland) Vol. 1. Newcastle: University of Newcastle upon Tyne; 2006.
    1. Tisdall K. National contexts affecting the lives of disabled children in Denmark, France, Germany, Ireland, Italy, Sweden and UK (England and Northern Ireland) Vol. 2. Newcastle: University of Newcastle upon Tyne; 2006.

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