Jeanine M Voorman

Activities and participation of 9- to 13-year-old children with cerebral palsy

Objective: To describe the activities and participation of children with cerebral palsy and to examine the relationship with personal factors and disease characteristics. Design: Cross-sectional study. Setting: Department of Rehabilitation Medicine of a University Medical Center in The Netherlands. Subjects: One hundred and ten children: 70 boys, 40 girls, mean (SD) age 11 years and 3 months (20 months). Outcome measures: Activities and participation, described in the domains of mobility, self-care, domestic life, social life and communication, measured with the Gross Motor Function Measure, the Pediatric Evaluation of Disability Inventory and the Vineland Adaptive Behavior Scales. Results: Multiple linear regression models showed that the Gross Motor Function Classification System (GMFCS) was strongly associated with mobility (explained variance 87-92%), self-care and domestic life. Apart from the GMFCS, cognitive impairment and limb distribution were less important but also significantly associated with self-care and domestic life (explained variance 65-81%). Cognitive impairment and epilepsy were the most important factors associated with social life and communication (explained variance 54-75%). Conclusion: Activities and participation can, to a large extent, be explained by only a few associated factors.

Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability

BACKGROUND For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. AIMS of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution. METHOD Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking. CONCLUSIONS Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.

Social Functioning and Communication in Children with Cerebral Palsy: Association with Disease Characteristics and Personal and Environmental Factors.

Aim  The objective of this longitudinal study was to describe the course of social functioning and communication in children with cerebral palsy (CP) over a 3‐year period, its difference with the normative course, and its relationship with disease characteristics and personal and environmental factors.

Self-worth, perceived competence, and behaviour problems in children with cerebral palsy

Purpose. To examine the relevance of physical disabilities for self-worth and perceived competence in children with cerebral palsy (CP), and to examine associations between behaviour problems and self-worth and perceived competence. Methods. The Harter scales for self-worth and perceived competence and a new scale for perceived motor competence were used in a sample of 80 children with CP. Their motor functioning was assessed with the Gross Motor Functioning Measure (GMFM) and behaviour problems with the Child Behaviour Check List administered to parents. Results. Self-worth and perceived competence for children with CP were comparable to the Dutch norm sample, except for perceived athletic competence. Within the CP sample, the GMFM showed a domain-specific effect on perceived motor competence. In the multivariate analysis, internalizing problems were associated negatively with all perceived competence scales and self-worth, whereas aggression was positively associated with perceived motor competence, physical appearance, and self-worth. Conclusions. Children with CP appear resilient against challenges posed to their self-worth caused by their disabilities. The relevance of the physical disability appears to be domain specific. For internalizing problems and aggression, different theoretical models are needed to account for their associations with self-worth and perceived competence.

Developmental Trajectories of Daily Activities in Children and Adolescents With Cerebral Palsy

OBJECTIVES: To describe the developmental trajectories of mobility performance and daily activities in children and young adults with cerebral palsy (CP). To explore the influence of gross motor function and intellectual disability on these trajectories. METHODS: Four hundred and twenty-four Dutch participants with CP (aged 1–20 years at study onset) were followed yearly over a period of 2 to 4 years. Developmental trajectories (from ages 1–16 years) were described for mobility performance and performance of daily activities, assessed by using the Vineland Adaptive Behavior Scale for gross motor function (classified by the Gross Motor Function Classification System) and intellectual disability (by IQ or school type). A subanalysis was done for performance of daily activities in a subgroup of participants without intellectual disability (aged 1–24 years). RESULTS: The developmental trajectories of mobility performance differed according to levels of gross motor function but not levels of intellectual disability. Intellectual disability affected the performance of daily activities, with lower overall trajectory levels for participants with intellectual disabilities. For participants without intellectual disability, high-level developmental trajectories were found, with values similar to those of typically developing children despite differences in gross motor function level. CONCLUSIONS: Mobility performance is determined mainly by levels of gross motor function. For performance of daily activities, intellectual disability was a more important determinant. Participants without intellectual disability showed developmental trajectories approaching values for typically developing participants. These estimated trajectories can guide rehabilitation interventions and future expectations for children and young adults with CP.

Manual ability and its relationship with daily activities in adolescents with cerebral palsy

OBJECTIVE To describe the manual ability of adolescents with cerebral palsy and to investigate the relationship of manual ability with daily activities. DESIGN Cross-sectional study. SUBJECTS Ninety-four adolescents with cerebral palsy, aged 12-16 years. METHODS Manual ability was assessed according to the Manual Ability Classification System (MACS) and the ABILHAND-Kids. Daily activities were assessed with the Vineland Adaptive Behavior Scales (VABS) sub-scales for (personal and domestic) daily living skills. The relationship between manual ability and daily activities was investigated with regression analysis: independent variables were manual ability, disease and personal characteristics. RESULTS MACS and ABILHAND-Kids were both strongly associated with personal daily activities (explained variance 77% and 84%, respectively) and less strongly with domestic daily activities (explained variance 45% and 62%, respectively). Including other disease characteristics and personal characteristics in the model increased the explained variance of personal daily activities to 91% for both models and the explained variance of domestic daily activities to 68% and 73% for the MACS and ABILHAND-Kids models, respectively. CONCLUSION Manual ability is limited in many adolescents with cerebral palsy, and limitations in manual ability are strongly related to limitations in daily activities.

Developmental trajectories of receptive and expressive communication in children and young adults with cerebral palsy.

The aim of this study was to determine the developmental trajectories of expressive (speech) and receptive (spoken and written language) communication by type of motor disorder and intellectual disability in individuals with cerebral palsy (CP).

Course of health-related quality of life in 9-16-year-old children with cerebral palsy: associations with gross motor abilities and mental health

Purpose. To chart the 3-year course of health-related quality of life (HRQoL) of 9–13-year-old children with cerebral palsy (CP), and to determine its relationship with gross motor abilities and mental health. Methods. Children (n = 91; 58 boys, mean age 11 years, age ranging from 8 years and 6 months to 13 years and 8 months) and parents were assessed annually with the TNO-AZL questionnaires for childrens health-related quality of life as a dependent variable, and the gross motor function measure for children with CP and the child behaviour check list as independent variables. Results. The children reported lower HRQoL compared with children in the general population, but reported a higher HRQoL than their parents. The HRQoL remained fairly stable over the 3 years, except for an increase in the autonomy domain. The HRQOL was moderately associated with gross motor abilities, and negatively associated with internalising mental health problems. Externalising problems were only negatively associated with parent-reported HRQoL. Conclusions. Children with CP are more resilient and positive about their HRQoL than their parents think they are. In general, mental health in children with CP appeared to be important in understanding their perceived QoL, in addition to the severity of the CP itself.

Longitudinal study of motor performance and its relation to motor capacity in children with cerebral palsy

Aim  The aim of this study was to describe the course of motor performance and analyse its relationship with motor capacity over a period of 3 years in 104 children (66 males, 38 females; 43% of those initially invited) with cerebral palsy (CP) aged 9, 11, and 13 years at the start of the study. Forty‐one had hemiplegia, 42 diplegia, 21 tetraplegia; 83 spastic CP, 17 dyskinetic/mixed, and four ataxic CP. Gross Motor Function Classification System (GMFCS) levels were I, n=49; II, n=15; III, n=10; IV, n=12; and V, n=18.

Developmental trajectories of social participation in individuals with cerebral palsy : A multicentre longitudinal study

This study aimed to determine the developmental trajectories of social participation, by level of gross motor function and intellectual disability, in a Dutch population of individuals with cerebral palsy (CP) aged 1 to 24 years.