© Borgis - New Medicine 4/2012, s. 108-113
*Lechosław P. Chmielik1, Anna Chmielik2, 3
A survey of health related quality of life (HRQL) in children with cerebral palsy
1Department of Pediatric ENT, Medical University of Warsaw, Poland
Head of Department: Lidia Zawadzka-Głos, MD, PhD
2Medical Radiology Unit, Military Medical Institute, Warsaw, Poland
Head of Radiology Unit: ass. prof. Romana Bogusławska, MD
3Paediatric Rehabilitation Clinic, Child Health Memorial Hospital, Warsaw, Poland
Head of Clinic: Jan Ciszewski, MD
Introduction. Assessing the quality of life forms a vital part of the complex process of therapeutic-rehabilitation in children. This enables specific domains of functioning to be defined and subsequently targeted for therapy in those areas most affected by Cerebral Palsy (CP) in order to minimise the impact of this illness.
Aims. To assess HRQL in children with CP depending on the type, the severity of CP, mental development and the comorbidity of epilepsy and defining those aspects of life on which CP has the strongest negative influence.
Material and methods. The study group consisted of 83 children aged 5-18 years. Data were obtained both from a questionnaire, (CHQ-PF 50), completed by parents and from clinical records.
Results. Scores ranged from 36.542 to 66.637 in the CHQ-PF 50 scales. The lowest parental ratings were for their children’s health status and capacity for future improvement. The greatest influence on the quality of life was the limited degree of personal time for the parents. The most severe CP was related to the lowest ratings for quality of life, but the family functions were unrelated to the type of CP and on severity of the symptoms. No statistically significant differences were found in any of the evaluated HRQL areas between children of normal intelligence and those with slight or moderate intellectual impairment.
Conclusions. CP decreases the quality of life in all of the analysed domains. This condition, regardless of the clinical type or severity, negatively affects the quality of life of the whole family mainly through limiting the amount of personal time for the parents.
Cerebral palsy occurs in 2-2.5 per 1000 births and constitutes the most frequent cause of disability in children. Treatment is long-term, costly and requires a constant commitment to be made by the child’s family. In the planning of complex medical-rehabilitation treatment regimes, it is vital to understand the influence of this illness on the patient’s quality of life as well on the family (1). The concept of health-related quality of life (HRQL), was introduced by Schipper in 1990 recognising the functional effects of the illness and its treatment from the patient’s viewpoint (2) An assessment on the quality of life should therefore take into account both an objective evaluation of the child’s functional state and a subjective one of the patient’s well being and that of their closest caregivers (3). Despite many attempts, HRQL has not yet been precisely defined but those generally used in studies are reduced to a listing of the components on the quality of life. According to most authors there are 3 fundamental factors; physical, psychological, and social. Up to now, there haven’t been any assessments in Poland on the effect of CP on various areas of the functioning of the child nor on the family. By thus assessing the quality of life in children with CP, a broader view on the child’s family life with a chronic illness can so be achieved which can therefore indicate the direction in which treatment and any help proceed.
The aim of the study was to assess the health-related quality of life in the children with CP into dependence on the CP types, severity, the stage of mental development, coexisting of epilepsy and defining those areas of life that are most negatively affected by this illness.
MATERIAL AND METHODS
The study was undertaken at the rehabilitation clinic of the Child Health Memorial Hospital, in Warsaw. It covered children and teenagers aged 5-18 years receiving treatment at this institute. A package was sent to the parents of 148 children with CP, including a study questionnaire and a letter which explained the purpose and study methods. A stamp addressed envelope for postal return was attached. Replies were received from 86 questionnaires out of which 83 were taken for further analysis (56.1%), where 3 questionnaires were rejected for not having been properly filled in. Hospital records provided information on age, gender, living address, CP type and the disease severity based on the GMFCS scale levels; (level I- child can independently walk, corresponding to GMFCS levels I and II; level II – child walks with assistance, corresponding to GMFCS levels II and III; level III – child requires an wheelchair for moving, corresponding to GMFCS levels IV and V). Data also included the degree of mental development according to ICD-10, the co-morbidity of epilepsy and other accompanying syndromes. The assessment of HRQL was based on 12 domains of the child’s life covering physical, psychological and social aspects based on the CHQ-PF 50 questionnaire concerning child health.
CHQ-PF 50 (The Child Health Questionnaire – Parent Form 50) was constructed to measure the physical and psychosocial well-being in children aged 5-18, in the USA in 1994 by Landgraf and Ware as a tool to measure HRQL in children that are healthy or suffering from chronic illnesses. The CHQ-PF 50 is filled in by the parent or caregiver. In giving answers to most of the questions, account is taken of the preceding 4 week period (4). A Polish version of the CHQ-PF 50 was used for the present work which previously had been successfully tested in a children’s study on Juvenile Idiopathic Arthritis (5). The measurement of the HRQL was undertaken in 12 categories covering; physical functioning (PF), limitations in social interactions caused by the child’s health (RP), general perception of health (GH), bodily pain and discomfort (BP), limitations to parent’s personal time due to the child’s condition; parent impact time – PT, influence of the child’s condition on the feelings of the parents; parental impact-emotional – PE, role/social limitations as a result of emotional-behavioural problems (REB), self esteem (SE), mental health (MH) and general behavior (BE), limitations in family activities (FA) and family cohesion (FC). The measurement results were numbered on a scale of 0-100, where the higher the number the better is the child’s welfare status. The overall HRQL assessment, is the total of all the 12 measurements. Statistical analysis was performed to investigate the significant associations between variables expressed as interval estimates by using Pearson’s Correlation Coefficient, Spearman’s Rank Correlation and Kendall Tau Rank Correlation Coefficient. For variables expressed in other ways the Kruskall-Wallace and Scheffe Multiple Comparison tests were used. Significance levels were taken as p ≤ 0.05.
The study group (83 children) consisted 45 boys and 38 girls with CP. The mean age was 11 years. The characteristics of the sample are shown in table 1.
Table 1. The characteristics of the sample n = (83).
| ||Numbers of children (%)|
|Type of CP||Diplegia||34 (40.96%)|
| ||Tetraplegia||25 (30.12%)|
| ||Hemiplegia||14 (16.87%)|
| ||Dyskinetisia||6 (7.23%)|
| ||Atalia||4 (4.82%)|
|Severity of CP||Level I ||46 (55.42%)|
| ||Level II ||23 (27.71%)|
| ||Level III ||14 (16.87%)|
|Degree of mental retardation||None||41 (49.40%)|
| ||Mild||16 (19.28%)|
| ||Limited||11 (13.25%)|
| ||Significant||11 (13.25%)|
| ||Deep||4 (4.82%)|
| ||No||46 (55.42%)|
Individual questionnaire scales
In all the studied domains, parents gave the lowest scores for the child’s state of health and possibility of future improvement (GH); (mean 36.542). A somewhat higher score, (mean 45.762), was obtained in the child’s physical functioning (PF). Distress concerning the child’s health (PE) and limitations in social functioning arising from physical disabilities (RP) were reflected in the mid scale scores with means ranging 49.344-52.04. The remaining areas were rated somewhat higher by the parents, (ranging from 60.299 to 66.63). A parental rating of their children’s behaviour (BE) received the highest score (66.637).
The effect of individual domains on the whole HRQL assessment
The dominating feature of the overall quality of life assessment was the illness’s limitations on the child impacting on family life especially on decreasing personal parental time. Further important areas were seen to be those concerning the social functioning of the child. However the influences of the child’s physical and emotional health were not that significant. Results are shown in table 2.
Table 2. The effect of the studied domains, on the overall HRQL assessment in order of decreasing significance.
|1.||Parental Impact Time |
|Distress suffered by the parents|
Limitations to joint family activities
Role/social limitations as a result of emotional-behavioural problems
|5.||Limitations in social interactions caused by the child’s state of health|
|6.||Overall perceptron of Heath|
Place of residence and HRQL
Statistically significant differences were seen in two categories between children from the countryside and towns/cities. Parents from the latter gave higher scores for the child’s general health perceptions and the possibilities for future improvement (GH) as well as for the child’s self esteem (SE). According to the opinion of parents from this group their children are more self-contented with their lives than their counterparts from the countryside. Results are shown in table 3.
Table 3. Mean results of HRQL measures amongst children living in the countrywide and towns/cities.
|Place of residence|
(n = 35)
(n = 48)
|PF||41.39||48.95||p > 0.05|
|RP||45.55||56.77||p > 0.05|
|GH||31.56||40.18||p < 0.05|
|BP||63.71||62.92||p > 0.05|
|FA||65.83||62.79||p > 0.05|
|REB||59.68||67.70||p > 0.05|
|PT||65.16||60.88||p > 0.05|
|PE||51.43||47.83||p > 0.05|
|SE||55.28||63.96||p < 0.05|
|MH||63.14||58.38||p > 0.05|
|BE||66.40||66.81||p > 0.05|
|FC||63.29||61.77||p > 0.05|
|Overall||672.42||698.93||p > 0.05|
CP Type and HRQL
Because of the small numbers of CP children with ataxia and dyskinesia, the statistical analysis was performed on those children groups with diplegic, hemiplegic and tetraplegic type of CP. Statistically significant differences were seen in the 2 categories: PF and SE. According to the parents, children with hemiplegia were physically more fit than those with diplegia or tetraplegia as well as being more self-content than children with tetrapegia. Results are shown in table 4.
Table 4. Mean results of HRQL measures amongst children with Diplegia, Hemiplegia, Tetraplegia, Cerebral type and pyramidal/extra-pyramidal of CP.
(n = 34)
(n = 14)
(n = 25)
(n = 4)
(n = 6)
|PF||41.34||72.22||45.33||p < 0.05||16.32||30.55|
|RP||60.05||67.86||39.78||p > 0.05||29.16||36.11|
|GH||41.16||35.12||34.01||p > 0.05||31.04||27.91|
|BP||62.35||68.57||52.20||p > 0.05||55.00||86.67|
|FA||69.66||58.93||59.83||p > 0.05||67.71||59.72|
|REB||76.63||73.80||49.33||p > 0.05||33.33||55.55|
|PT||69.36||58.73||55.55||p > 0.05||63.88||62.96|
|PE||53.06||48.21||44.33||p > 0.05||56.25||47.22|
|SE||65.10||61.55||53.53||p < 0.05||61.46||57.64|
|MH||60.63||60.00||60.60||p > 0.05||61.25||58.47|
|BE||70.90||62.46||62.32||p > 0.05||72.92||66.00|
|FC||61.76||64.29||62.00||p > 0.05||76.25||54.17|
|Overall||731.99||731.72||623.81||p > 0.05||624.55||642.96|
Disease severity and HRQL
Powyżej zamieściliśmy fragment artykułu, do którego możesz uzyskać pełny dostęp.
Mam kod dostępu
- Aby uzyskać płatny dostęp do pełnej treści powyższego artykułu albo wszystkich artykułów (w zależności od wybranej opcji), należy wprowadzić kod.
- Wprowadzając kod, akceptują Państwo treść Regulaminu oraz potwierdzają zapoznanie się z nim.
- Aby kupić kod proszę skorzystać z jednej z poniższych opcji.
- dostęp do tego artykułu
- dostęp na 7 dni
uzyskany kod musi być wprowadzony na stronie artykułu, do którego został wykupiony
- dostęp do tego i pozostałych ponad 7000 artykułów
- dostęp na 30 dni
- najpopularniejsza opcja
- dostęp do tego i pozostałych ponad 7000 artykułów
- dostęp na 90 dni
- oszczędzasz 28 zł
1. Eiser C: Childrens quality of life measures. Arch Dis Child 1997; 77(4): 350-354. 2. Schipper H, Clinch J, Powell V: Definitions and conceptual issues. [In:] Spilker B (ed.): Quality of life assessments in clinical trials. Raven Press, New York 1990; 11-24. 3. Koman LA, Smith B, Shilt JS: Cerebral palsy. Lancet 2004; 363: 1619-1631. 4. Landgraf JM, Ware JE Jr: Child Health Questionnaire (CHQ): A User’s Mannual. Health Act, Boston, MA 1999. 5. Romicka AM, Ruperto N, Gutowska-Grzegorczyk G et al.: The Polish version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). Clin Exper Rheumatol 2001; 19 (Suppl. 23): 121-125. 6. Sawyer MG, Spurrier N, Kennedy D, Martin J: The relationship between asthma severity, family functioning and health-related quality of life of children with asthma. Qual Life Res 2000; 9: 1105-1115. 7. Sawyer MG, Whaites L, Rey JM et al.: Health-related quality of life of children and adolescents with mental disorders. Am Acad Child Adolesc Psychiatry 2002; 41: 530-537. 8. Liptak GS, O’Donnell M, Conaway M: Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol 2001; 43(6): 364-370. 9. Samson-Fang L, Fung E, Stallings V: Relationship of nutritional status and societal participation in children with cerebral palsy. J Pediatrics 2002; 141(5): 637-643. 10. McCarthy M, Silberstein C, Atkins E: Comparing reliability and validity of pediatric instruments for measuring health and well-being of children with spastic cerebral palsy. Dev Med Child Neurol 2002; 44: 468-476. 11. Wake M, Salmon L, Reddihough: Health status of Australian children with mild to severe cerebral palsy: cross-sectional survey using the Child Health Questionnaire. Dev Med Child Neurol 2003; 45: 194-199. 12. Vitale MG, Roye D, Levy DE et al.: An exploration of quality of life outcomes measures in scoliosis and cerebral palsy. Pediatrics 1999; 104 (Suppl. 716). 13. Schneider J, Gurucharri L, Gutierrez A, Gabler-Spira D: Health-related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol 2001; 43: 601-608. 14. Pisula E: Psychologiczne problemy rodziców dzieci z zaburzeniami rozwoju. Wydawnictwa Uniwersytetu Warszawskiego, Warszawa 1998.