ORIGINAL PAPER
Quality of life in children and young people with tetraplegic cerebral palsy
Submission date: 2017-03-07
Final revision date: 2017-11-05
Acceptance date: 2017-12-18
Publication date: 2018-06-30
Medical Studies 2018;34(2):112-119
KEYWORDS
TOPICS
ABSTRACT
Introduction:
Health-related quality of life (HRQOL) is an important outcome of health interventions for children and youths with cerebral palsy (CP).
Aim of the research:
To describe HRQOL of children and young people with tetraplegic cerebral palsy from the parents’ perspectives, and explore the impact of four factors (severity of CP, intellectual disability, age, and gender) on HRQOL.
Material and methods:
This is a descriptive study, conducted in educational centres in central and southern Poland. The study encompassed a group of 149 children and youths with tetraplegic cerebral palsy (TCP). The HRQOL study described in this paper was carried out using the PedsQL 4.0 Generic Core and PedsQL 3.0 Cerebral Palsy Module.
Results:
The lowest subscale score in generic core scales was physical functioning (mean ± SD: 11.1 ±8.5), the highest being emotional functioning (47.1 ±22.2). The lowest subscale score in CP module was daily activities (3.2 ±8.5), the highest being pain and hurt (57.1 ±29.3). PedsQL scores were related to MASC level, GMFCS level, and degree of intellectual disability, but not gender. Age correlated only with the assessment of pain and hurt (Pearson r = –0.190; p = 0.020). This study showed significant deficits in HRQOL for children with TCP, especially as regards their physical HRQOL.
Conclusions:
More studies aimed at searching factors related to psychosocial HRQOL are needed. In relation with the increasing life expectancy of persons with TCP, parents and health professionals should pay more attention to appropriate assessment of pain.
Health-related quality of life (HRQOL) is an important outcome of health interventions for children and youths with cerebral palsy (CP).
Aim of the research:
To describe HRQOL of children and young people with tetraplegic cerebral palsy from the parents’ perspectives, and explore the impact of four factors (severity of CP, intellectual disability, age, and gender) on HRQOL.
Material and methods:
This is a descriptive study, conducted in educational centres in central and southern Poland. The study encompassed a group of 149 children and youths with tetraplegic cerebral palsy (TCP). The HRQOL study described in this paper was carried out using the PedsQL 4.0 Generic Core and PedsQL 3.0 Cerebral Palsy Module.
Results:
The lowest subscale score in generic core scales was physical functioning (mean ± SD: 11.1 ±8.5), the highest being emotional functioning (47.1 ±22.2). The lowest subscale score in CP module was daily activities (3.2 ±8.5), the highest being pain and hurt (57.1 ±29.3). PedsQL scores were related to MASC level, GMFCS level, and degree of intellectual disability, but not gender. Age correlated only with the assessment of pain and hurt (Pearson r = –0.190; p = 0.020). This study showed significant deficits in HRQOL for children with TCP, especially as regards their physical HRQOL.
Conclusions:
More studies aimed at searching factors related to psychosocial HRQOL are needed. In relation with the increasing life expectancy of persons with TCP, parents and health professionals should pay more attention to appropriate assessment of pain.
REFERENCES (49)
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.
2.
Pakula AT, Van Naarden Braun K, Yeargin-Allsopp M. Cerebral palsy: classification and epidemiology. Phys Med Rehabil Clin N Am 2009; 20: 425-452.
3.
Venkateswaran S, Shevell MI. Comorbidities and clinical determinants of outcome in children with spastic quadriplegic cerebral palsy. Dev Med Child Neurol 2008; 50: 216-222.
4.
Andersen GL, Irgens LM, Haagaas I, Skranes JS, Meberg AE, Vik T. Cerebral palsy in Norway: prevalence, subtypes and severity. Eur J Paediatr Neurol 2008; 12: 4-13.
5.
Odding E, Roebroeck ME, Stam HJ. The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disabil Rehabil 2006; 28: 183-191.
6.
Surveillance of cerebral palsy in Europe (SCPE): Prevalence and characteristics of children with cerebral palsy in Europe. Dev Med Child Neurol 2002; 44: 633-640.
7.
Westbom L, Hagglund G, Nordmark E. Cerebral palsy in a total population of 4-11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems. BMC Pediatr 2007; 7: 41.
8.
Zgorzalewicz B, Mieszczanek T, Zgorzalewicz M. Epidemiologia opisowa mózgowego porażenia dziecięcego, Ortop Traum Rehab 2001; 3: 467-471.
9.
Bax M, Tydeman C, Flodmark O. Clinical and MRI correlates of cerebral palsy: the European cerebral palsy study. JAMA 2006; 296: 1602-1608.
10.
Shevell MI, Dagenais L, Hall N. The relationship of cerebral palsy subtype and functional motor impairment: a population-based study. Dev Med Child Neurol 2009; 51: 872-877.
11.
Kulak W, Sobaniec W, Smigielska-Kuzia J, Kubas B, Walecki J. A comparison of spastic diplegic and tetraplegic cerebral palsy. Pediatr Neurol 2005; 32: 311-317.
12.
Edebol-Tysk K, Hagberg B, Hagberg G. Epidemiology of spastic tetraplegic cerebral palsy in Sweden. II. Prevalence, birth data and origin. Neuropediatrics 1989; 20: 46-52.
13.
Himmelmann K, Beckung E, Hagberg G, Uvebrant P. Gross and fine motor function and accompanying impairments in cerebral palsy. Dev Med Child Neurol 2006; 48: 417-423.
14.
WHO. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41: 1403-1409.
15.
Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008; 17: 1163-1171.
16.
White-Koning M, Arnaud C, Dickinson HO, 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: 804-814.
17.
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.
18.
White-Koning M, Arnaud C, Bourdet-Loubère S, Bazex H, Colver A, Grandjean H. Subjective quality of life in children with intellectual impairment: how can it be assessed? Dev Med Child Neurol 2005; 47: 281-285.
19.
Waters E, Doyle J, Wolfe R, Wright M, Wake M, Salmon L. Influence of parental gender and self-reported health and illness on parent-reported child health. Pediatrics 2000; 106: 1422-1428.
20.
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.
21.
Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006; 4: 58.
23.
Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the Pediatric Quality of Life Inventory. Med Care 1999; 37: 126-139.
24.
Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 2.
25.
Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediat 2003; 3: 329-341.
26.
Varni JW, Limbers CA. The PedsQL 4.0 Generic Core Scales Young Adult Version: feasibility, reliability and validity in a university student population. J Health Psychol 2009; 14: 611-622.
27.
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. Dev Med Child Neurol 2006; 48: 442-449.
28.
Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin SJ, Malcarne VL, Chambers HG. Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of children. Dev Med Child Neurol 2005; 47: 592-597.
29.
Pirpiris M, Gates PE, McCarthy JJ, D’Astous J, Tylkowski C, Sanders JO, Dorey FJ, Ostendorff S, Robles G, Caron C, Otsuka NY. Function and well-being in ambulatory children with cerebral palsy. J Pediatr Orthop 2006; 26: 119-124.
30.
Du RY, McGrath C, Yiu CK, King NM. Health- and oral health-related quality of life among preschool children with cerebral palsy. Qual Life Res 2010; 19: 1367-1371.
31.
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.
32.
Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil 2005; 86: 940-945.
33.
Sandella DE, O’Brien LM, Shank LK, Warschausky SA. Sleep and quality of life in children with cerebral palsy. Sleep Med 2011; 12: 252-256.
34.
Russo RN, Goodwin EJ, Miller MD, Haan EA, Connell TM, Crotty M. Self-esteem, self-concept, and quality of life in children with hemiplegic cerebral palsy. J Pediatr 2008; 153: 473-477.
35.
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.
36.
Janssen CG, Voorman JM, Becher JG, Dallmeijer AJ, Schuengel C. 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.
37.
Soyupek F, Aktepe E, Savas S, Askin A. Do the self-concept and quality of life decrease in CP patients? Focussing on the predictors of self-concept and quality of life. Disabil Rehabil 2010; 32: 1109-1115.
38.
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.
39.
Varni JW, Limbers CA, Burwinkle TM. Impaired healthrelated quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 43.
40.
Okurowska-Zawada B, Kułak W, Otapowicz D, Sienkiewicz D, Paszko-Patej G, Wojtkowski J. Quality of life in children and adolescents with cerebral palsy and myelomeningocele. Pediatr Neurol 2011; 45: 163-168.
41.
Karaduman A, Yilmaz Ö, Tüzün EH, Kerem Günel M, Aras B, Mutlu A, Tarsuslu T, Aras Ö. A comparison of quality of life in children with cerebral palsy and neuromuscular diseases. Fizyoterapi Rehabilitasyon 2010; 21: 3-10.
42.
Michalska A, Wendorff J, Boksa E, Wiktor PJ. Jakość życia dzieci i młodzieży z mózgowym porażeniem dziecięcym i niepełnosprawnością intelektualną. Wybrane uwarunkowania kliniczne. Neurol Dziec 2012; 21: 39-48.
43.
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.
44.
Michalska A, Boksa E, Wendorff J, Wiktor PJ. Jakość życia dzieci i młodzieży z mózgowym porażeniem dziecięcym i niepełnosprawnością intelektualną. Wybrane uwarunkowania społeczno-demograficzne. Neurol Dziec 2012; 21: 35-44.
45.
Radsel A, Osredkar D, Neubauer D. Health-related quality of life in children and adolescents with cerebral palsy. Zdr Varst 2016; 56: 1-10.
46.
Tessier DW, Hefner JL, Newmeyer A. Factors related to psychosocial quality of life for children with cerebral palsy. Int J Pediatr 2014; 2014: 204386.
47.
Usuba K, Oddson B, Gauthier A, Young NL. Changes in gross motor function and health-related quality of life in adults with cerebral palsy: an 8-year follow-up study. Arch Phys Med Rehabil 2014; 95: 2071-2077.
48.
Park EY. Relationship between activity limitation and health-related quality of life in school-aged children with cerebral palsy: a cross-sectional study. Health Qual Life Outcomes 2017; 15: 87.
49.
Majnemer A, Shevell M, Rosenbaum P, Law M, Poulin C. Determinants of life quality in school-age children with cerebral palsy. J Pediatr 2007; 151: 470-5.
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