Health-Related Quality of Life in Childhood Cerebral Palsy

Division of Pediatric Rehabilitation, Department of Physical Medicine and Rehabilitation, University of Cincinnati College of Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Archives of Physical Medicine and Rehabilitation (Impact Factor: 2.57). 06/2005; 86(5):940-5. DOI: 10.1016/j.apmr.2004.10.036
Source: PubMed


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.
Not applicable.
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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    • "Given the expectation of long-term survival in children with psychomotor impairments, consideration of their quality of life (QoL) is essential. Studies have shown that the health-related QoL of individuals with cerebral palsy is lower than that of the general population [7] [12] [13]. However, in patients who are able to self-report, subjective well-being was comparable to that of the general population, and the average differences in QoL between the least able and the most able patients with cerebral palsy were generally less than 0.5 SD [14]. "
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    ABSTRACT: Aim: The aim of the study was to understand the long-term health issues and potential predictors of cardiopulmonary arrest (CPA) in patients with severe childhood-onset psychomotor impairments. Method: In this single-center, retrospective observational study, the medical records of 140 patients with severe childhood-onset psychomotor impairments were reviewed. The medical interventions and functional status of patients with a history of CPA (n=22: 14M/8F; mean±SD age: 26.6±12.4years) were compared with age- and sex-matched patients without a history of CPA (n=44: 28M/16F; mean±SD age: 26.5±12.3years). Results: The prevalence of CPA was 15.7%. The most frequent cause was respiratory issues, and CPA occurred most frequently between 0 and 5years old. The patients who had a history of CPA were more likely to have required a feeding tube (p=0.0007), tracheostomy (p<0.0001), and ventilator (p=0.002) compared to the non-CPA patients, while the prevalence of tracheostomy or ventilator treatment during early infancy was comparable between both groups. Although statistically non-significant, patients who used antiepileptics or feeding tubes during the neonatal period had higher odds of a future CPA. Interpretation: This single-center study indicated that the prevalence of CPA could be high among individuals with severe childhood-onset psychomotor impairments, and patients who experience CPA have more health issues. The potential predictors for a future CPA are young age (0-5years), respiratory issues, and antiepileptic or feeding tube usage during the neonatal period. These patients may require extra attention in medical managements.
    Brain & development 10/2015; DOI:10.1016/j.braindev.2015.10.005 · 1.88 Impact Factor
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    • "Others reported different results: psychosocial domains were less severely affected than physical domains. According to parental reports, children with CP have reduced quality of life (as measured by a quality of life inventory), and the degree of impact is related to the severity of the condition [25]. In the vastness of difference that can occur in the symptomology of children with CP, it is important to remember that true physical disability may or may not be different than the disability perceived by the child. "
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    ABSTRACT: The aim of the study was to investigate the prevalence of mental health problems and quality of life among Palestinian disable children. The sample consisted of 391 disable Palestinian children in the Gaza Strip which was selected randomly from the data base of two NGOs working with such group of children. The age of children ranged from 6-18 years with mean age (11.73). Instruments: The children and adolescents demographic data were collected by questionnaire include sex, age, class, and place of residence, Gaza Child Health Study Scales (parents and children forms), and The Pediatric Quality of Life Inventory generic core (version 4.0) scale. The results showed that children reported mean conduct disorder was 1.33; oppositional disorder was 5; mean over-anxious was 6.75; separation anxiety mean was 6.36; and depression was 7.57. There were statistically significant differences toward boys in depression. According to parents, mean conduct disorder mean was 1.94; mean oppositional disorder was 6.09; mean overanxious was 7.47; separation anxiety mean was 6.48; and mean depression was 9.6. The study showed that mean depression in boys was 10.4 compared to 8.9 in girls. There were statistically significant differences toward boys in depression. Parents of children with physical disabilities reported more overanxious problems in their children compared to other parents with other types of disabilities (vision, mental, and multiple). Also, parents of children with physical disability had more separation anxiety than other groups (mental and multiple disabilities). Quality of life of children was scored by children themselves; mean emotional functioning was 8.24; mean social functioning was 6.65; school functioning mean was 9.17; and cognitive functioning was 8.57. The study showed that 995 mental health problems rated by children such as conduct disorder was positively correlated with emotional and cognitive functioning; oppositional disorder was correlated with emotional, social, and cognitive function; overanxious disorder was correlated emotional, school, and cognitive functioning; separation anxiety was correlated emotional functioning; and depression was correlated emotional, social, and cognitive functioning.
    Health 09/2015; 7(08):994-1006. DOI:10.4236/health.2015.78117 · 0.51 Impact Factor
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    • "Research about child-related predictors of psychosocial HRQoL indicates significant relationships for measures of child behavior [8,10,24,27], and disability level [12,14,15,17,22]. From a family and community perspective, significant predictors of psychosocial HRQoL include parent impact [15,22], family support [28], school environmental supports [17], parenting styles [29], parent’s emotional health [20] and parent’s rating of general health [12,13]. "
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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. DOI:10.1186/1471-2431-14-26 · 1.93 Impact Factor
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