ORIGINAL PAPER
Health-related quality of life in children and adolescents with cerebral palsy with proper cognitive development
1
Falulty of Medicine, Collegium Medicum, University of Rzeszow, Poland
2
Clinical Regional Rehabilitation and Education Centre for Children and Adolescents, Rzeszow, Poland
3
Faculty of Health Sciences and Psychology, Collegium Medicum, University of Rzeszow, Poland
Submission date: 2024-04-18
Final revision date: 2024-07-02
Acceptance date: 2024-07-31
Publication date: 2025-06-12
Corresponding author
Agnieszka Bejer
Faculty of Health Sciences and Psychology Collegium Medicum University of Rzeszow Rejtana 16 C, 35-959 Rzeszow, Poland
Faculty of Health Sciences and Psychology Collegium Medicum University of Rzeszow Rejtana 16 C, 35-959 Rzeszow, Poland
Medical Studies 2025;41(2):119-129
KEYWORDS
TOPICS
ABSTRACT
Introduction::
The assessment of the health-related quality of life (HRQoL) of children and adolescents with cerebral palsy (CP) can help to highlight the most significant problems related to daily functioning. Aim of the research: Assessment of quality of life in children and adolescents with CP with proper cognitive development and comparison of the assessment of quality of life from the perspective of the child and the parents.
Material and methods::
This cross-sectional study involved a group of 64 children and adolescents with CP in the intellectual norm. Subjects presented various stages of functional capacities (Gross Motor Function Classification System-GMFSC; Manual Ability Classification System-MACS), and in daily communication skills (Communication Function Classification System-CFCS). The Kidscreen-27 questionnaire, which was completed by children and 58 parents, was used to assess HRQoL.
Results::
HRQoL is statistically higher in the group of children with CP (p < 0.05) compared to the population norm for children in Poland, except for domain IV of Peers & Social Support. Children with CP rated their HRQoL in the domains of Physical Well-Being and Psychological Well-Being significantly better than their parents (p < 0.05). At the same time, parents rated their children’s HRQoL slightly better in the domain of Autonomy & Parents. Physical disability does not seem to have a significant impact on the level of HRQoL in intellectually normal children and adolescents with CP, making their prospects for good social functioning high.
Conclusions::
This knowledge should be the basis of social and educational policies to prevent the marginalization of people with physical disabilities and to enable them to participate as widely as possible in the society.
The assessment of the health-related quality of life (HRQoL) of children and adolescents with cerebral palsy (CP) can help to highlight the most significant problems related to daily functioning. Aim of the research: Assessment of quality of life in children and adolescents with CP with proper cognitive development and comparison of the assessment of quality of life from the perspective of the child and the parents.
Material and methods::
This cross-sectional study involved a group of 64 children and adolescents with CP in the intellectual norm. Subjects presented various stages of functional capacities (Gross Motor Function Classification System-GMFSC; Manual Ability Classification System-MACS), and in daily communication skills (Communication Function Classification System-CFCS). The Kidscreen-27 questionnaire, which was completed by children and 58 parents, was used to assess HRQoL.
Results::
HRQoL is statistically higher in the group of children with CP (p < 0.05) compared to the population norm for children in Poland, except for domain IV of Peers & Social Support. Children with CP rated their HRQoL in the domains of Physical Well-Being and Psychological Well-Being significantly better than their parents (p < 0.05). At the same time, parents rated their children’s HRQoL slightly better in the domain of Autonomy & Parents. Physical disability does not seem to have a significant impact on the level of HRQoL in intellectually normal children and adolescents with CP, making their prospects for good social functioning high.
Conclusions::
This knowledge should be the basis of social and educational policies to prevent the marginalization of people with physical disabilities and to enable them to participate as widely as possible in the society.
REFERENCES (46)
1.
Michalska A, Wendorff J, Boksa E, Wiktor PJ. Quality of life of children and young people with cerebral palsy and intellectual disability. Selected clinical conditionings. Neurol Dz. 2012; 21: 39-48.
2.
Zhou J, Butler EE, Rose J. Neurologic correlates of gait abnormalities in cerebral palsy: implications for treatment. Front Hum Neurosci. 2017; 11: 103.
3.
Türkoğlu G, Türkoğlu S, Çelik C, Uçan H. Intelligence, functioning, and related factors in children with cerebral palsy. Noro Psikiyatr Ars. 2017; 54: 33-37.
4.
Rosińczuk J, Lach K, Kołtuniuk A. Daily functioning problems in children with cerebral palsy (CP) aged 5 and more. J Neurol Neurosurg Nurs 2014; 3: 52-57.
5.
Bullinger M, Ravens-Sieberer U. Health related quality of life assessment in children: a review of the literature. Rev Eur Psychol Appl. 1995; 45: 245-254.
6.
World Health Organization. Geneva, Switzerland: Division of Mental Health, World Health Organization, Geneva, Switzerland, 1993.
7.
Aran A. Quality of life in children with cerebral palsy. In: Handbook of Disease Burdens and Quality of Life Measures Springer. Preedy VR, Watson RR (eds.). New York, USA 2010.
8.
Vles GF, Hendriksen R, Hendriksen J, van Raak EPM, Soudant D, Vles JSH, Gavilanes AWD. 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.
9.
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.
10.
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.
11.
Tan SS, van Meeteren J, Ketelaar M, Schuengel C, Reinders-Messelink HA, Raat H, Dallmeijer AJ, Roebroeck ME; PERRIN+ study group. 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.
12.
Calley A, Williams S, Reid S, Blair E, Valentine J, Girdler S, Elliott C. A comparison of activity, participation and quality of life in children with and without spastic diplegia cerebral palsy. Disabil Rehabil. 2012; 34: 1306-1310.
13.
Boldyreva U, Streiner D, Rosenbaum P, Ronen G. Quality of life in adolescents with epilepsy, cerebral palsy, and population norms. Dev Med Child Neurol. 2020; 2(5): 609-614.
14.
Makris T, Dorstyn D, Crettenden A. Quality of life in children and adolescents with cerebral palsy: a systematic review with meta-analysis. Disab Rehab. 2021; 43(3): 299-308.
15.
Power R, King C, Muhit M, Heanoy E, Galea C, Jones C, Badawi N, Khandaker G. Health-related quality of life of children and adolescents with cerebral palsy in low- and middle-income countries: a systematic review. Develop Med Child Neurol. 2018; 60: 469-479.
16.
Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, Power M, Duer W, Cloetta B, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J; European KIDSCREEN Group. The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Qual Life Res. 2007; 16(8): 1347-1356.
17.
Mazur J, Małkowska-Szkutnik A, Dzielska A, Tabak I. Polska wersja kwestionariuszy do badania jakości życia związanej ze zdrowiem dzieci i młodzieży (KIDSCREEN). Instytut Matki i Dziecka, Warszawa 2008.
18.
Palisano R, Hanna SE, Rosenbaum P, Russell D, Walter SD, Wood EP, Galuppi BE. Validation of a model of gross motor function for children with cerebral palsy. Phys Ther. 2000; 80: 974-985.
19.
Rosenbaum PL, Palisano RJ, Bartlett DJ, Galuppi BE, Russel DJ. Development of the gross motor function classification system for cerebral palsy. Dev Med Child Neurol. 2008; 50: 249-253.
20.
Eliasson AC, Krumlinde Sundholm L, Rösblad B, Beckung E, Arner M, Öhrvall AM, Rosenbaum P. The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Develop Med Child Neurol. 2006; 48: 549-554.
21.
Hidecker MJC, Paneth N, Rosenbaum PL, Kent RD, Lillie J, Eulenberg JB, Chester K, Johnson B, Michalsen L, Evatt M, Taylor K. Developing and validating the Communication Function Classification System (CFCS) for individuals with cerebral palsy. Develop Med Child Neurol. 2011; 53: 704-710.
22.
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.
23.
Colver A, Rapp M, Eisemann N, Ehlinger V, Thyen U, Dickinson HO, Parkes J, Parkinson K, Nystrand M, Fauconnier J, Marcelli M, Michelsen SI, Arnaud C. Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis, Lancet. 2015; 385(9969): 705-716.
24.
Rasmus A, Mańko G, Miotk-Mrozowska M, Hajdukie- wicz A, Kiżewska A. The quality of life of children after mild and moderate traumatic brain injury. Acta Neuropsychol. 2016; 14: 141-154.
25.
Raport Rzecznika Praw Dziecka – Ogólnopolskie badanie jakości życia dzieci i młodzieży w Polsce. Warszawa 2022; 96-111.
26.
Dąbrowska-Zimakowska A. Poczucie koherencji i radzenie sobie ze stresem przez młodych dorosłych z mózgowym porażeniem dziecięcym. Postęp Rehab. 2015; 1: 5-12.
27.
Vidart d’Egurbide Bagazgoïtia N, Ehlinger V, Duffaut C, Fauconnier J, Schmidt-Schuchert S, Thyen U, Himmelmann K, Marcelli M, Arnaud C. Quality of life in young adults with cerebral palsy: a longitudinal analysis of the SPARCLE Study. Front Neurol. 2021; 12: 73397.
28.
Chiarello LA, Palisano RJ, McCoy SW, Bartlett DJ, Wood A, Chang HJ, Kang LJ, Avery L. Child Engagement in Daily Life: a measure of participation for young children with cerebral palsy. Disabil Rehabil. 2014; 36: 1804-1816.
29.
Michelsen SI, Flachs EM, Damsgaard MT, Parkes J, Parkinson K, Rapp M, Arnaud C, Nystrand M, Colver A, Fauconnier J, Dickinson HO, Marcelli M, Uldall P. European study of frequency of participation of adolescents with and without cerebral palsy. Eur J Paediatr Neurol. 2014; 18: 282-294.
30.
Pinquart M. Systematic review: bullying involvement of children with and without chronic physical illness and/or physical/sensory disability – a meta-analytic comparison with healthy/nondisabled peers. J Pediatr Psychol. 2017; 42: 245-259.
31.
Nadeau L, Tessier R. Social adjustment of children with cerebral palsy in mainstream classes: peer perception. Dev Med Child Neurol. 2006; 48: 331-336.
32.
Van Harmelen AL, Gibson JL, St Clair MC, Owens M, Brodbeck J, Dunn V, Lewis G, Croudace T, Jones PB, Kie- vit RA, Goodyer IM. Friendships and family support reduce subsequent depressive symptoms in at-risk adolescents. PLoS One. 2016; 11: e0153715.
33.
Whitney DG, Peterson MD, Warschausky SA. Mental health disorders, participation, and bullying in children with cerebral palsy. Dev Med Child Neurol. 2019; 61(8): 937-942.
34.
Dunn DS, Uswatte G, Elliott TR, Lastres A. A positive psychology of physical disability: principles and progress. In: The Oxford Handbook of Positive Psychology and Disability. Wehmeyer ML (ed.). New York (NY): Oxford University Press 2013; 427-439.
35.
Hart A, Heaver B, Brunnberg E, Sandberg A, MacPher- son H, Coombe S, Kourkoutas E. 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(3): 394-422.
36.
Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Reliability in the ratings of quality of life between parents and their children of schoolage with cerebral palsy. Qual Life Res. 2008; 17: 1163-1171.
37.
White-Koning M, Arnaud CO, Dickinson H, Thyen U, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Parkinson K, Schirripa G, Colver A. Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics. 2007; 120(4): 804-814.
38.
Sentenac M, Rapp M, Ehlinger V, Colver A, Thyen U, Arnaud C. Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence. Dev Med Child Neurol. 2021; 63(1): 68-74.
39.
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.
40.
Gilson KM, Davis E, Reddihough D, Graham K, Waters E. Quality of life in children with cerebral palsy: implications for practice. J Child Neurol. 2014; 29: 1134-1140.
41.
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.
42.
White-Koning M, Grandjean H, Colver A, Arnaud C. 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.
43.
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.
44.
Jiang B, Walstab J, Reid MS, Davis E, Reddihough D. Quality of live in young adults with cerebral palsy. Disab Health. 2016; 9(4): 673-681.
45.
Jarl J, lriksson-Schmidt A, Rodby-Bousquet E. Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors. Disab Health J. 2019; 12(3): 460-466.
46.
Davis E, Waters E, Mackinnon A, Reddihough D, Gra- ham 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.
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