Health-Related Quality of Life in Childhood Cerebral Palsy

ArticleinArchives of Physical Medicine and Rehabilitation 86(5):940-5 · June 2005with18 Reads
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.
    • "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]. "
    [Show abstract] [Hide abstract] 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.
    Article · Oct 2015
    • "The study showed that mean emotional functioning was 8.24 (SD = 5.17), mean social functioning was 6.65 (SD = 4.82), school functioning mean was 9.17 (SD = 4.51), and cognitive functioning was 8.57 (SD = 6.67). Others reported slightly different results: Psychosocial domains were less severely affected than physical do- mains [25] . 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. "
    [Show abstract] [Hide abstract] 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.
    Full-text · Article · Sep 2015
    • "However, despite the increasing prevalence of CP, the medical innovation and development, observed in the 1970s and 1980s, contributed to a significant increase in average life expectancy , which boosted the research to understand how the CP can affect the quality of life (QOL) of these individuals, including their levels of mobility and participation (Kennes et al., 2002; Wake et al., 2003). Research results show that children with CP have a more impaired QOL in all domains when compared with other able-body children (Vargus-Adams, 2003; Varni et al., 2007), but another study concludes that the QOL of this group is only lower in the physical domain and not in the psychological and social domains (Dickinson et al., 2007). The QOL of adults with CP is significantly affected in all domains assessed by The World Health Organization Quality of Life (WHOQOL-BREF): Physical, Psychological, Social Relationships and Environment (Carona et al., 2010). "
    [Show abstract] [Hide abstract] ABSTRACT: This research characterizes mobility, accessibility and safety of individuals with severe motor impairment such as users suffering from Cerebral Palsy (CP). Through the analysis of enabling factors, constraints associated and the search of possible improvements, it is possible to identify the needs in these fields and subsequently develop strategies accordingly. The sample was collected in Coimbra Cerebral Palsy Association (APCC) and it included 16 individuals with CP. To these individuals we gave an evaluation protocol with a form with clinical and sociodemographic data and a questionnaire. The main limiting factors include building/vehicle access, difficulty in reverse drive and lack of safety. The most valued features of a powered wheelchair are comfort and structure, easy navigation and wheelchair control and safety. The lack of safety in the outdoors was a relevant limiting factor. Almost all individuals requested improvements of the powered wheelchair. The most requested improvements were safety related or related with navigation problems. An assistive navigation solution based on a shared control algorithm is presented, where a powered wheelchair is equipped with the Kinect sensor, in order to help the user maneuvering the wheelchair safely.
    Full-text · Conference Paper · Jan 2015 · Health
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