| 1. |
- Beckung, Eva, 1950, et al.
(author)
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Health status of children with cerebral palsy living in Europe: a multi-centre study.
- 2008
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In: Child: care, health and development. - : Wiley. - 1365-2214 .- 0305-1862. ; 34:6, s. 806-14
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Journal article (peer-reviewed)abstract
- AIM: The aim of this report is to describe the health status of 8-12-year-old children with cerebral palsy (CP) of all severities in Europe using the Child Health Questionnaire (CHQ). METHOD: A total of 818 children with CP from nine centres in defined geographical areas participated. CP type, gross and fine motor function, additional impairments were classified and family data were obtained. The CHQ was used to measure the parent's perception of their child's physical (PHY) and psychosocial (PSY) health. RESULTS: PHY scores were lower than the reference samples with a median of 46. The severity of gross motor function influenced the CHQ scores significantly in the PHY scale with the lowest scores for children with least gross motor function. There were significant differences between the CP types in PHY with the higher scores for children with unilateral spastic and the lowest scores for children with bilateral spastic and dyskinetic CP type. Fine motor function severity significantly affected both the PHY and PSY scales. The severity of intellectual impairment was significantly associated with CHQ scores in most dimensions with higher scores for higher IQ level in PHY and PSY. Children with seizures during the last year had a significantly lower health compared with children without seizures. The results of the multivariate regression analyses (forward stepwise regression) of CHQ scores on CP subtype, gross and fine motor function, cognitive function, additional impairments, seizures, parental education and employment revealed gross motor function, cognitive level and type of school attended were significant prognostic factors. CONCLUSION: This report is based on the largest sample to date of children with CP. Health status as measured using the CHQ was affected in all children and was highly variable. Gross motor function level correlates with health from the PHY well-being perspective but the PSY and emotional aspects do not appear to follow the same pattern.
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| 2. |
- Dickinson, H., et al.
(author)
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Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy
- 2006
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In: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 6
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Journal article (peer-reviewed)abstract
- BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8-12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias.
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| 3. |
- Dickinson, H. O., et al.
(author)
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Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study
- 2007
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In: Lancet. - 1474-547X. ; 369:9580, s. 2171-8
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Journal article (peer-reviewed)abstract
- BACKGROUND: Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. METHODS: 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population. FINDINGS: Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7.6, 95% CI 2.7-12.4); intellectual impairment with reduced mean for moods and emotions (3.7, 1.5-5.9) and autonomy (3.3, 0.9-5.7); and speech difficulties with reduced mean for relationships with parents (4.5, 1.9-7.1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible. INTERPRETATION: Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.
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| 4. |
- Jarvis, S., et al.
(author)
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Case gender and severity in cerebral palsy varies with intrauterine growth
- 2005
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In: Arch Dis Child. - 1468-2044. ; 90:5, s. 474-9
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Journal article (peer-reviewed)abstract
- BACKGROUND: There is an unexplained excess of cerebral palsy among male babies. There is also variation in the proportion of more severe cases by birth weight. It has recently been shown that the rate of cerebral palsy increases as intrauterine size deviates up or down from an optimum about one standard deviation heavier than population mean weight-for-gestation. AIMS: To determine whether the gender ratio or the severity of cases also varies with intrauterine size. METHODS: A total of 3454 cases of cerebral palsy among single births between 1976 and 1990 with sufficient data to assign case severity (based on intellectual impairment and walking ability) and to compare weight-for-gestation at birth to sex specific fetal growth standards, were aggregated from nine separate registers in five European countries. RESULTS: The greater the degree to which growth deviates either up or down from optimal weight-for-gestation at birth, the higher is the rate of cerebral palsy, the larger is the proportion of male cases, and the more severe is the functional disability. Compared to those with optimum growth the risk of more severe cerebral palsy in male babies is 16 times higher for those with a birth weight below the 3rd centile and four times higher when birth weight is above the 97th centile. In contrast, for mild cerebral palsy in female babies the excess risks at these growth extremes are about half these magnitudes. CONCLUSIONS: Among singleton children with cerebral palsy, abnormal intrauterine size, either small or large, is associated with more severe disability and male sex.
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| 5. |
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| 6. |
- McManus, V., et al.
(author)
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Discussion groups with parents of children with cerebral palsy in Europe designed to assist development of a relevant measure of environment
- 2006
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In: Child Care Health Dev. - 0305-1862. ; 32:2, s. 185-92
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Journal article (peer-reviewed)abstract
- BACKGROUND: An instrument to measure environmental factors relevant to physically impaired children is being developed in a European context. Preliminary work in England had identified some potentially important themes. Further inquiry was needed to identify issues important in other European countries. OBJECTIVE: To inform the content of a questionnaire relevant to the environment of children with cerebral palsy (CP) living in Europe. DESIGN: A qualitative study using discussion groups. PARTICIPANTS: Parents of 28 children with CP from five countries; Denmark, France, Italy, Ireland and Sweden. One discussion group was held in each country with an average of seven parents per group. RESULTS: The four themes identified in the preliminary work done in England were strongly confirmed across Europe - namely: Mobility, Transport, Support by and to parents, and Attitudes of individuals and institutions towards children. Two new themes identified in the discussion groups were Bureaucracy and Access to information about rights and entitlements. CONCLUSIONS: The environmental factors that cause concern to parents of children with CP are similar across Europe. A prototype environmental questionnaire has been developed based on these findings. The environmental questionnaire is in use in a study in nine European centres.
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| 7. |
- White-Koning, M, et al.
(author)
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Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.
- 2007
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In: Pediatrics. 2007. ; 4:Oct;120
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Journal article (peer-reviewed)abstract
- OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS: This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life. PMID: 17908738 [PubMed - indexed for MEDLINE] Related LinksThe health and well-being of caregivers of children with cerebral palsy. [Pediatrics. 2005]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]Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? [Int J Cancer Suppl. 1999]Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. [Lancet. 2007]Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. [Pediatrics. 2004]
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