Cerebral palsy has a significant impact on one’s quality of life. It affects all parts of daily life, from walking, to eating, to sleeping. Overall, cerebral palsy limits the independence of its sufferers, making it almost impossible for them to live without help. Many people with cerebral palsy have trouble communicating (usually a problem with speech) which only compounds the challenges they face in terms of movement. In addition, many of the cerebral palsied experience accompanying health issues, such as pain, scoliosis, joint dislocations, and nutritional problems.
Health Related Quality of Life (HRQOL) is an important outcome in the delivery of health care. Research on the HRQOL in young people with cerebral palsy (CP) has relied on proxy-reports from parents. The purpose of this study was to investigate the self-reported HRQOL of young people with CP. A survey was mailed to 229 adolescents with CP in South Australia, of which 118 responded (51.5%). Seventy-one participants 11 to 17 years of age, self-reported HRQOL on the Pediatric Quality of Life Inventory 4.0 (PedsQL). Thirty-eight youth were deemed by their parent/guardian as having insufficient cognitive ability to self-report HRQOL and nine respondents returned their surveys incomplete. The mean PedsQL Physical Function score was 57.3 (SD = 24.3), the mean Psychosocial Function score was 64.5 (SD = 15.9), and the Overall PedsQL score was 62.0 (SD = 16.7). Compared to norms for children without disabilities, 67% of participants had an Overall PedsQL score greater than 1 SD below the mean. PedsQL scores were related to gross motor function classification level (Spearman's rho = -0.54), number of health issues (rho = -0.51), and socioeconomic status (rho = 0.28), but not age, gender, quality of sleep, or whether parent assistance was needed to complete the PedsQL. The results have implications for policy and efforts to identify and address barriers to full and satisfying participation in mainstream schools and community activities.
[Maher, C. A., Olds, T., Williams, M. T. & Lane, A. E. (2008). Self-reported quality of life in adolescents with cerebral palsy. Physical & Occupational Therapy in Pediatrics, 28(1), 41-57.]
This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive cross-sectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.
[Livingston, M. H., Rosenbaum, P. L. Russell, D. J. & Palisano, R. J. (2007). Quality of life among adolescents with cerebral palsy: What does the literature tell us? Developmental Medicine and Child Neurology, 49(3), 225-31.]
This study assessed stability of measurement of quality of life (QOL) and health-related quality of life (HRQOL) over the course of 1 year among 185 adolescents (mean age 16y, SD 1 y 9 mo) with cerebral palsy (CP). Participants were classified on the Gross Motor Function Classification System as level I (n=55), II (n=30), III (n=27), IV (n=46), or V (n=27). QOL was assessed by self- (n=125) or proxy-report (n=60) with the Short Version of the Quality of Life Instrument for People with Developmental Disabilities (QOL Instrument), which describes domains of Being, Belonging, and Becoming. HRQOL was captured through parent proxy-reports with the Health Utilities Index Mark 3 (HUI3). Generalizability coefficients (G) for domain and Overall QOL scores on the QOL Instrument ranged from 0.50 to 0.73, indicating that between 50 and 73% of the variance was stable over 1 year. Stability on the HUI3 was excellent (G>0.90) for ambulation and overall utility scores; moderate (G=0.70-0.90) for speech, vision, dexterity, cognition, and hearing; and low for pain (G=0.48) and emotion (G=0.24). Correlations between scores on the two instruments were moderate even when adjustments were made for the lack of perfect stability over 1 year. This supports the notion that QOL and HRQOL are different aspects of life experience among adolescents with CP.
[Livingston, M. H. & Rosenbaum, P. L. (2008). Adolescents with cerebral palsy: Stability in measurement of quality of life and health-related quality of life over 1 year. Developmental Medicine and Child Neurology, 50(9), 696-701.]
The measurement of health-related quality of life (HRQL) in children with cerebral palsy is part of an emerging discipline. Theoretical models of disability and chronic illness developed by the World Health Organization, the National Center for Medical Rehabilitation Research and others are being adapted for children. Development of HRQL measures in paediatrics lags behind the work completed with adults due to challenges unique to children, such as what domains to measure, whose perspective to address and the developmental changes inherent to children. The descriptive HRQL studies of children with moderate to severe cerebral palsy and comparisons of children with quadriplegia vs. diplegia and hemiplegia are presented. Consistent with the functional measures, no significant difference in HRQL by treatment was documented in children with spastic diplegia participating in a randomized clinical trial of selective dorsal rhizotomy. HRQL measures that are specifically tailored to cerebral palsy need to be developed. Generic and individualized measures of HRQL are currently available and while limited, may be useful for evaluating the effect of different treatments for spasticity on the quality of life in children with cerebral palsy.
[Bjornson, K. F. & McLaughlin, J. F. (2001). The measurement of health-related quality of life (HRQL) in children with cerebral palsy. European Journal of Neurology, 8(Suppl. 5), 183-93.]
Given that quality of life (QOL) is commonly confused with functioning, the aim of this study was to examine the association between functioning and QOL domains for children with cerebral palsy (CP). Two hundred and five parents of children aged 4 to 12 years with CP and 53 children aged 9 to 12 years with CP, completed the Cerebral Palsy Quality of Life Questionnaire for Children. Children were distributed reasonably evenly between sex (male, 54.6%) and Gross Motor Function Classification System levels (I 17.8%, II 28.3%, III 14.1%, IV 11.2%, and V 27.3%). For parent proxy-report, all domains of QOL were significantly associated with functioning level except access to services. For child self-report, feelings about functioning, participation and physical health, and pain and feelings about disability, were significantly associated with functioning level. Physical type domains of QOL accounted for more of the variance in functioning than psychosocial type domains. Children with CP have the potential to report a high psychosocial QOL score even if they have poor functioning.
[Shelly, A., Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Boyd, R., Reid, S. & Graham, H. K. (2008). The relationship between quality of life and functioning for children with cerebral palsy. Developmental Medicine and Child Neurology, 50(3), 199-203.]
OBJECTIVE: The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.
METHODS: Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.
RESULTS: The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.
CONCLUSIONS: The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.
[Arnaud, C., White-Koning, M., Michelsen, S. I., Parkes, J., Parkinson, K., Thyen, U., Beckung, E., Dickinson, H. O., Fauconnier, J., Marcelli, M., McManus, V. & Colver, A. (2008). Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics, 121(1), 54-64.]
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.
[Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., Beckung, E., Fauconnier, J., McManus, V., Michelsen, S. I., Parkes, J. & Colver, A. F. (2007). Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. Lancet, 369(9580), 2171-8.]
OBJECTIVE: To assess the impact of parenting style and disease severity on quality of life (QOL) in children with cerebral palsy (CP).
STUDY DESIGN: Thirty-nine children with CP, their siblings, and their parents participated in the study. Probands and siblings, ages 6 to 18 years, completed questionnaires on parenting style (accepting, rejecting, controlling, and autonomy allowing) using the Children's Report of Parental Behavior Inventory. Parents completed generic (Child Health Questionnaire [CHQ]) and disease-specific (Pediatric Outcomes Data Collecting Instrument [PODCI]) QOL questionnaires for both children. A physician determined disease severity with the Gross Motor Function Classification System.
RESULTS: In children with CP, parenting style positively correlated with the CHQ scores: physical summary and psychosocial summary (r = 0.40, P = .01) and family activities scale (r = 0.34, P = .03). Autonomy allowing parenting style impacted on psychosocial aspects of QOL, as reflected by CHQ scores, more than the degree of disability. In other domains of QOL, the effect of parenting style was greater than IQ, anxiety, and socioeconomic status.
CONCLUSIONS: Parenting style is a significant factor in QOL in CP and the only known factor to impact on the psychosocial domains of the CHQ, exceeding the effect of disease severity. Because QOL is an important treatment goal in children with CP, early family interventions, particularly those focusing on parenting style, should be considered.
[Aran, A., Shalev, R. S., Biran, G. & Gross-Tsur, V. (2007). Parenting style impacts on quality of life in children with cerebral palsy. The Journal of Pediatrics, 151(1), 56-60.]
OBJECTIVE: To characterize the quality of life of children with cerebral palsy from the parents' and children's perspectives.
STUDY DESIGN: Ninety-five children were recruited; a parent, and when feasible, the child also completed the Child Health Questionnaire and Pediatric Quality of Life Inventory. A range of predictor variables was measured relating to impairments, activity limitations, personal and environmental factors.
RESULTS: Mean age was 9.3 +/- 2.1 years; 63.2% were male, and almost half had mild motor impairment (47% Gross Motor Function Classification System level I). Mean physical well-being (Child Health Questionnaire) was 39.6 +/- 16.9 with 50% <40; and mean psychosocial well-being was 43.0 +/- 11.3 with 53.8% <40. Similarly, with the Pediatric Quality of Life Inventory, 61% had summary scores <1 SD. Scores of parents and their children were significantly correlated (physical: r = .59, P < .0001; psychosocial: r = .39, P = .01); however, children rated themselves higher.
CONCLUSIONS: Results indicate that quality of life is highly variable in children with cerebral palsy, with about half experiencing a life quality similar to typically developing children. Motor and other activity limitations are indicators of physical but not psychosocial well-being. Family functioning, behavioral difficulties, and motivation are important predictors of social-emotional adaptation. Determinants of life quality may guide resource allocation and health promotion initiatives to optimize health of the child and family.
[Majnemer, A., Shevell, M., Rosenbaum, P., Law, M. & Poulin, C. (2007). Determinants of life quality in school-age children with cerebral palsy. The Journal of Pediatrics, 151(5), 470-5.]
OBJECTIVE: To describe the health-related quality of life (HRQOL) of a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire.
DESIGN: Survey of the parents or guardians of children with CP.
SETTING: Outpatient clinics at a tertiary care children's hospital.
PARTICIPANTS: 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.
INTERVENTIONS: Not applicable.
MAIN OUTCOME MEASURE: HRQOL scores, as determined by the Child Health Questionnaire-Parent Form 50.
RESULTS: 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.
CONCLUSIONS: Children with CP have reduced HRQOL and the degree to which it is reduced is related to the severity of their CP.
[Vargus-Adams, J. (2005). Health-related quality of life in childhood cerebral palsy. Archives of Physical Medicine and Rehabilitation, 86(5), 940-5.]
OBJECTIVE: To ascertain the strength of the association between childhood disability and abuse and neglect.
METHODS: Systematic review of population-based studies published between 1966 and January 2006. Medline, Embase, Cinahl, Cochrane library, National Research Register, Social Sciences database and PsychInfo databases were searched for potentially relevant studies. Inclusion criteria: population-based cohort, case-control or cross-sectional studies of children <18 years of age that reported empirical data on the association of abuse with disability. Risk estimates were expressed as odds ratios with 95% confidence intervals (CI) where possible. Meta-analysis was not undertaken because of heterogeneity of studies.
RESULTS: Four studies met the inclusion criteria. Two were longitudinal studies, one was a retrospective birth cohort and the remaining study was a cross-sectional survey. Types of disability studied varied widely as did methods used to ascertain abuse and neglect. Two studies accounted for potential confounding. Three studies reported an association between psychological and emotional disabilities and abuse. Two studies reported an association of learning disability with abuse. Only one study examined the association of physical disability (cerebral palsy) with abuse reporting an adjusted odds ratio for all forms of abuse of 1.79 (95% CI 0.96, 3.36) and for physical abuse of 3.00 (95% CI 1.29, 6.78).
CONCLUSIONS: The evidence base for an association of disability with abuse and neglect is weak. Psychological and emotional problems, and learning difficulties appear to be associated with abuse but this association might arise because these conditions share a common aetiological pathway with abuse. There is limited evidence that physical disability predisposes to abuse.
[Govindshenoy, M. & Spencer, N. (2007). Abuse of the disabled child: A systematic review of population-based studies. Child: Care, Health and Development, 33(5), 552-8.]