Health-related quality of life in childhood cerebral palsy.
ABSTRACT To describe the health-related quality of life (HRQOL) of a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire.
Survey of the parents or guardians of children with CP.
Outpatient clinics at a tertiary care children's hospital.
Children (N=177; 98 boys, 79 girls; mean age +/- standard deviation [SD], 8.6+/-4.2y) with CP were enrolled as a convenience sample. Study subjects were stratified by severity of CP using the Gross Motor Function Classification System.
HRQOL scores, as determined by the Child Health Questionnaire-Parent Form 50.
Parents reported reduced HRQOL for their children with CP. In the physical function domain, most children scored over 3 SDs below a normative sample, and scores in parental impact domains were at least 1 SD below the normative sample. Psychosocial domains were less impaired. Most of the effects on physical and parent impact domains were greater in children with more severe CP, although they were significant in most strata of severity.
Children with CP have reduced HRQOL and the degree to which it is reduced is related to the severity of their CP.
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ABSTRACT: Outcomes of health and rehabilitation services for children and youth with disabilities increasingly include assessments of health-related quality of life (HRQoL). The purpose of this research was to 1) describe overall patterns of HRQoL, 2) examine changes in parent's perceptions of child's HRQoL across 18 months and 3) explore factors that predict these changes. Participants in this study included 427 parents of children (229 boys and 198 girls) with a physically-based disability between the ages of 6 to 14 years. The Child Health Questionnaire (CHQ) was administered three times, at nine month intervals. Comparisons to the CHQ normative data were analyzed at Time 1 using t-tests, and change over time was examined using linear mixed-effects models. Possible predictors were modeled: 1) child's factors measured by the Activities Scale for Kids, Strengths and Difficulties Questionnaire, and general health measured by SF-36, 2) family characteristics measured by the Impact on Family Scale and 3) environmental barriers measured by the Craig Hospital Inventory of Environmental Factors. CHQ scores of the study's participants demonstrated significantly lower summary scores from the normative sample for both CHQ Physical and Psychosocial summary scores. On average, children did not change significantly over time for physical summary scores. There was an average increase in psychosocial health that was statistically significant, but small. However, there was evidence of heterogeneity among children. Environmental barriers, behavioral difficulties, family functioning/impact, general health and child physical functioning had negative and significant associations with physical QoL at baseline. Change in physical QoL scores over time was dependent on children's behavioral difficulties, family functioning and environmental barriers. Environmental barriers, behavioral difficulties, family functioning/impact and general health had significant associations with psychosocial scores at baseline, but none served as predictors of change over time. Children with physical disabilities differ from the normative group on parent ratings of their physical and psychosocial health. While there was little average change in CHQ scores over 18 months, there is evidence of heterogeneity among children. Factors such as environmental barriers, family functioning/impact, child physical functioning and behavioral difficulties and general health significantly influence QoL scores as measured by the CHQ.BMC Pediatrics 01/2014; 14(1):26. · 1.98 Impact Factor
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ABSTRACT: This study investigated the determinants of quality of life (QOL) of children with cerebral palsy (CP) considering possible variables comprehensively from a biopsychosocial perspective by adopting the International Classification of Functioning, Disability and Health (ICF) and using a CP-specific QOL questionnaire. A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers participated in this study. Children's QOL was measured by the Cerebral Palsy Quality of Life for Children (CP QOL-Child) - primary caregiver proxy-report form. The potential determinants of QOL were collected based on all ICF dimensions. Results of seven multiple regression models showed that the determinants of QOL in children with CP were multidimensional and biopsychosocial in nature, i.e., encompassing the domains of health condition, body functions and structures, and contextual factors of the ICF. Children's behavioral and emotional problems as well as caregiver's psychological and family-related factors were important determinants of QOL in children with CP. Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention targeted at these determinants to improve the QOL of children with CP.Research in developmental disabilities 12/2013; 35(2):520-528. · 4.41 Impact Factor
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ABSTRACT: Children with chronic conditions often experience numerous symptoms, but few research studies examine patterns of symptoms and quality of life (QoL) indicators. To examine if reliable latent classes of children with chronic medical conditions can be identified based on the clustering of symptoms and QoL indicators. Structured interviews were conducted with children ages 9-21 living with chronic medical conditions (N = 90). Multiple symptoms (e.g., pain, sleep, fatigue, and depression) and QoL indicators (e.g., life satisfaction and social support) were measured. Physical health and emotional, social, and school functioning were measured using the Pediatric Quality of Life Inventory (PedsQL). Latent class analysis was used to classify each child into a latent class whose members report similar patterns of responses. A three-class solution had the best model fit. Class 1 (high-symptom group; n = 15, 16.7%) reported the most problems with symptoms and the lowest scores on the QoL indicators. Class 2 (moderate-symptom group; n = 39, 43.3%) reported moderate levels of both symptoms and QoL indicators. Class 3 (low-symptom group; n = 36, 40.0%) reported the lowest levels of symptoms and the highest scores on the QoL indicators. The three latent classes identified in this study were distributed along the severity continuum. All symptoms and QoL indicators appeared to move in the same direction (e.g., worse symptoms with lower QoL). The PedsQL psychosocial health summary score (combining emotional, social, and school functioning scores) discriminated well between children with different levels of disease burden.Disability and Health Journal 01/2014; 7(1):96-104. · 1.50 Impact Factor