There is no place like @home!: The value of home consultations in paediatric rehabilitation.

BACKGROUND: Family-centred services (FCS) is widely regarded as the best practice approach in early interventions. Creating a therapeutic environment, which also stimulates collaboration between parents and service professionals, is a way to conform to the principles of FCS. The present paper describes the project entitled @home, involving the implementation of home consultations by a specialized team working with children aged 0-5 years at our rehabilitation centre in the Netherlands. The objectives of this article are to (a) describe the development and implementation of home consultations as part of regular care and (b) share the experiences of parents and service providers with home consultations. METHOD: The implementation process was divided into 3 steps: (1) interviewing experts, (2) adjusting current rehabilitation trajectories, and (3) service providers offering consultations to children at home. The experiences with the home consultations were immediately incorporated in the system, making the implementation an iterative process. RESULTS: In 82% of the 133 home conducted consultations, the service professionals reported that it was more valuable to offer home consultations than seeing the child at the rehabilitation centre. The semistructured interviews revealed that parents and service providers found that they received and provided more tailored advice, perceived a more equal partnership between service professionals and parents, and reported that the home consultations provided a good natural therapeutic environment where a child can be itself and where the child performs best. CONCLUSION: By using the @home system based on the 3 service models, home consultations are now part of the regular paediatric rehabilitation system at our rehabilitation centre.

Predictive value of serum sST2 in preschool wheezers for development of asthma with high FeNO.

Wheezing is common in childhood. However, current prediction models of pediatric asthma have only modest accuracy. Novel biomarkers and definition of subphenotypes may improve asthma prediction. Interleukin-1-receptor-like-1 (IL1RL1 or ST2) is a well-replicated asthma gene and associates with eosinophilia. We investigated whether serum sST2 predicts asthma and asthma with elevated exhaled NO (FeNO), compared to the commonly used Asthma Prediction Index (API). Using logistic regression modeling, we found that serum sST2 levels in 2-3 years-old wheezers do not predict doctors' diagnosed asthma at age 6 years. Instead, sST2 predicts a subphenotype of asthma characterized by increased levels of FeNO, a marker for eosinophilic airway inflammation. Herein, sST2 improved the predictive value of the API (AUC=0.70, 95% CI 0.56-0.84), but had also significant predictive value on its own (AUC=0.65, 95% CI 0.52-0.79). Our study indicates that sST2 in preschool wheezers has predictive value for the development of eosinophilic airway inflammation in asthmatic children at school age.

Family-centred service: differences in what parents of children with cerebral palsy rate important.

BACKGROUND: A family-centred approach to services of children with disabilities is widely accepted as the foundational approach to service delivery in paediatric health care. The 56 items of the Measure of Processes of Care questionnaire (MPOC-56) all reflect elements of family-centred service. In this study, we investigated which elements of family-centred service are rated important by parents of children with cerebral palsy by adding a question on importance to each item of the MPOC-56 (MPOC-56-I). METHODS: In total, 175 parents of children with cerebral palsy completed the MPOC-56-I. For each MPOC item, parents were asked to rate the importance on a 5-point scale ranging from 0 (not important at all) up to and including 4 (very important). We used Spearman's rank correlation coefficient to further explore the variation in parents' importance ratings. RESULTS: Parents' importance ratings of the MPOC-56 items varied. The percentage of parents rating an item important (importance rating 3 or 4) varied between 43.8% and 96.8%. The percentage of parents rating an item unimportant (rating 0 or 1) varied between 0.0% and 20.3%, and the percentage of parents rating an item neutral (rating 2) varied between 3.0% and 36.0%. Most diverse importance ratings were found for five items concerning the provision of general information. Three correlations between these items and child and parent characteristics were found. Six items were rated important by almost all (≥95%) parents. These items concern elements of specific information about the child, co-ordinated and comprehensive care for child and family and enabling and partnership. CONCLUSIONS: Parents rate the importance of family-centred services for their situation in various ways. These findings endorse that family-centred services should recognize the uniqueness of families and should be tailored to what parents find important.

The challenge of measuring IL-33 in serum using commercial ELISA: lessons from asthma.

BACKGROUND: Interleukin-33 (IL-33) has been subject of extensive study in the context of inflammatory disorders, particularly in asthma. Many human biological samples, including serum, have been used to determine the protein levels of IL-33, aiming to investigate its involvement in asthma. Reliable methods are required to study the association of IL-33 with disease, especially considering the complex nature of serum samples. OBJECTIVE: We evaluated four IL-33 ELISA kits, aiming to determine a robust and reproducible approach to quantifying IL-33 in human serum from asthma patients. METHODS: IL-33 levels were investigated in serum of well-defined asthma patients by the Quantikine, DuoSet (both R&D systems), ADI-900-201 (Enzo Life Sciences), and SKR038 (GenWay Biotech Inc San Diego USA) immunoassays, as well as spiking experiments were performed using recombinant IL-33 and its soluble receptor IL-1RL1-a. RESULTS: We show that 1) IL-33 is difficult to detect by ELISA in human serum, due to lack of sensitivity and specificity of currently available assays; 2) human serum interferes with IL-33 quantification, in part through IL-1RL1-a; and 3) using non-serum certified kits may lead to spurious findings. CONCLUSION AND CLINICAL RELEVANCE: If IL-33 is to be studied in the serum of asthma patients and other diseases, a more sensitive and specific assay method is required, which will be vital for further understanding and targeting of the IL-33/IL-1RL1 axis in human disease.

Parents' perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services.

AIM: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. BACKGROUND: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (MPOC-56) on three occasions pre (2) and post (1) transition to school-based services. Friedman tests were used to describe changes in parents' perceptions over time. Mann-Whitney U tests were used to describe differences in course of parents' perceptions between regular school and special school or day care. RESULTS: Parents' perceptions of preschool services were stable between the ages of 2.5 and 3.5 years, with a decline after transition on four of the five domains of the MPOC (P < 0.05). The domain providing general information was scored lowest (median at baseline 3.56, IQR 2.39) compared with the four other MPOC domains, but remained stable over time. No differences in course of parental perceptions were found for school type. CONCLUSION: The transition from preschool to school-based services for children with CP is associated with a decrease in parents' perception of family centredness independent of the type of school. The transition in services has a negative impact on perceived family-centred practices.

What do parents need to enhance participation of their school-aged child with a physical disability? A cross-sectional study in the Netherlands.

BACKGROUND: The aim was to provide an overview of the number, domains and priority of needs as expressed by parents in supporting participation of their school-aged child with a physical disability. Additionally, this study investigated whether the number of needs within each domain is related to the child's gross motor function level, parent's perceived own general health, family socio-economic status and family type. METHOD: A cross-sectional study with a total of 146 participants (84.9% mothers) who completed a survey including the Family Needs Inventory - Paediatric Rehabilitation, the Gross Motor Function Classification System Family Report Questionnaire, the General Health Questionnaire and a demographic questionnaire. A need has been operationalized as 'a family's, parent's or other family member's expressed desire for information, services and supports related to their family'. Descriptive statistics and correlation analysis were applied. RESULTS: Parents (n = 146; response rate 27%) varied in the number of expressed needs (range 0-124; mean = 35.9; median = 30; SD = 25.6). Highest mean percentage scores were found for the domains 'Laws, regulations and fees' (36%), 'Leisure time' (35.6%) and 'Aids, adaptations, facilities and resources' (33.8%). Seven single needs were expressed by 50% or more of the parents. All domains of needs showed a positive correlation with perceived parental general health. The domains 'Laws, regulations and fees', 'Day care & school', 'Emotional and mental support' and 'Raising my child' correlated negatively with family socio-economic status; and child's gross motor function level correlated positively with the domains 'Aids, adaptations, facilities and resources', 'Practical support at home' and 'Leisure time'. CONCLUSIONS: As parents have a major influence on participation of children with a physical disability, meeting their individual needs should become an objective for service providers and policy makers. Family-centred service might be more effective by putting a greater emphasis on changing the environment.

Do children participate in the activities they prefer? A comparison of children and youth with and without physical disabilities.

OBJECTIVE: To assess the discrepancy between the leisure activities children prefer and the leisure activities they actually participate in, for children with and without a physical disability, and to explore how in both groups this is related to age and gender. DESIGN: Cross-sectional comparison. SUBJECTS: Children with and without physical disabilities that were recruited from schools for special education and regular schools in the Netherlands. MAIN MEASURES: The Children's Assessment of Participation and Enjoyment (CAPE) and the Preferences for Activities of Children (PAC). A discrepancy score was calculated representing high preference but no participation in the activity in the past four months. RESULTS: A total of 141 children (6-18 years) with a physical disability (mean age 12.5, 43% girls, 57% boys) and 156 children without physical disabilities (mean age 11.5, 55% girls,45% boys) were included in the study. There was no significant difference in discrepancy scores between children with and without physical disabilities (informal activities 9.8 ± 5.0 vs. 9.8 ± 4.6, formal activities 6.4 ± 3.4 vs. 6.6 ± 2.8). Discrepancy between preference and performance varied by age and gender for children without disabilities but not for children with disabilities. CONCLUSIONS: Both groups are equally able to participate in the activities they prefer. Age and gender had a significant effect on the discrepancy scores for children and adolescents without physical disabilities but not for children with physical disabilities.

Assessment of family needs in children with physical disabilities: development of a family needs inventory.

BACKGROUND: Valid tools to assess family needs for children with physical disabilities are needed to help tune paediatric rehabilitation care processes to individual needs of these families. To create such a family needs inventory, needs of families of children with a physical disability (age 0-18 years) were identified. We examined differences in the number and type of needs listed by families when asked for by means of an interview compared with using an inventory. METHODS: Forty-nine families of children with a wide variety of physical disabilities (mean age 7.7 years; SD 4.6) participated in semi-structured interviews, focusing on family needs. They also checked an inventory of 99 items (based on a previously conducted literature review), regarding their family needs. In addition, individual interviews with healthcare professionals, and panel meetings with healthcare professionals and parents were held to further identify relevant family needs for the inventory. RESULTS: The individual parent and healthcare professional interviews raised 41 needs that were not included in the original inventory of 99 items. Moreover, the panel meetings raised a further 49 needs. After restructuring and reformulating several items, a 187-item Family Needs Inventory - Paediatric Rehabilitation (FNI-PR) was created. The parent interviews revealed significantly less family needs (mean number of needs = 10.8; SD = 6.0) compared with using the inventory (mean number of needs = 31.7; SD = 19.7) (P < 0.0001). Most expressed family needs were related to both general and specific information concerning the child's development and treatment, aids and information about legislation and to rules relating to compensation of costs. CONCLUSION: Based on responses of parents and healthcare professionals the FNI-PR has been developed, a comprehensive inventory for family needs that can be used in paediatric rehabilitation. An inventory checked by parents resulted in more family needs than a single open-ended question. The inventory may facilitate the implementation of family-centred care.

Parents' experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review.

Understanding the experiences of parents with their child's intervention might help meet the needs of parents and, subsequently get them engaged in their child's intervention. As parents' early beliefs regarding their child's intervention has consequences for treatment participation, it is important to understand these parental perspectives. The aim of this mixed studies review was to give an overview of the experiences and related factors of parents of young children (0-5 years of age) with cerebral palsy in relation to the physical and/or occupational therapy of their child in a rehabilitation setting. The literature was searched systematically for qualitative and quantitative studies published between January 1990 and July 2011. Inclusion criteria were (1) the study population consisted of parents of children with cerebral palsy, with at least 25% of children under the age of five; (2) children had received physical and/or occupational therapy in a rehabilitation setting; and (3) the experiences of the parents with their child's therapy were addressed. Data were synthesized with the framework synthesis method resulting in a conceptual framework describing the factors that are related to the parents' experiences with their child's interventions. A total of 13 studies (eight qualitative and five quantitative) were included and evaluated. Parents expressed various aspects in context, process and outcomes when asked about their experiences with their child's intervention. They had different needs over time and needed time to build a collaborative relationship with their child's therapists. The proposed framework acknowledges the various aspects in context, process and outcomes that parents reported when asked about their experiences. Knowing this, the importance of the broader context of the child in a family should be acknowledged; realizing the impact that the demands of daily life, supports and resources provided to parents, attitudes in the community and culture have on parental experiences.

Predicting leisure participation of school-aged children with cerebral palsy: longitudinal evidence of child, family and environmental factors.

OBJECTIVE: This longitudinal study aims to determine which child, family and environmental variables measured at 2 years of age predict leisure participation in formal and informal activities in school aged children with cerebral palsy (CP). METHODS: Parents of 46 children with CP (mean age at baseline: 2 years 6 months, SD 0 years 1 month; at follow-up 6 years 7 months, SD 0 years 9 months; n = 26 boys, n = 20 girls; Gross Motor Classification System I = 30%, II = 7%, III = 28%, IV = 24%, V = 11%) completed the Children's Assessment of Participation and Enjoyment indicating their child's participation. Multivariate regression models were used to identify early predictors of participation. RESULTS: Movement ability was a significant child-related predictor for formal activities (R(2) 17%, P < 0.05). Movement ability and social skills were most predictive (R(2) 62%, P < 0.00) for informal activities. The feeling of being restricted in family participation was the single most predictive factor for formal and informal activities at family level (R(2) 12%, P < 0.05, R(2) 25%, P < 0.05). Type of daycare was the only environmental variable that was predictive, and only for informal activities (R(2) 16%, P < 0.05). In the overall model movement ability was most predictive for leisure participation in formal activities (R(2) 17%, P < 0.05). Movement ability and social skills are the most important predictors for informal leisure participation (R(2) 62%, P < 0.01). CONCLUSIONS: Several variables are found to be related to formal and informal participation at age 6. Movement ability and social skills at age 2 are most predictive of leisure participation when the child is 6 years old.

What monozygotic twins discordant for phenotype illustrate about mechanisms influencing genetic forms of neurodegeneration.

As monozygotic (MZ) twins are believed to be genetically identical, discordance for disease phenotype between MZ twins has been used in genetic research to understand the contribution of genetic vs environmental factors in disease development. However, recent studies show that MZ twins can differ both genetically and epigenetically. Screening MZ twins for genetic and/or epigenetic differences could be a useful and novel approach to identify modifying factors influencing phenotypic expression of disease. MZ twins that are phenotypically discordant for monogenic diseases are of special interest. Such occurrences have been described for Huntington's disease, spinocerebellar ataxias, as well as for familial forms of Alzheimer's disease. By comparing MZ twins that are phenotypically discordant, crucial factors influencing the phenotypic expression of the disease could be identified, which may be of relevance for understanding disease pathogenesis and variability in disease phenotype. Overall, understanding the crucial factors in development of a neurodegenerative disorder will have relevance for predictive testing, preventive treatment and could help to identify novel therapeutic targets.

Development of non-verbal intellectual capacity in school-age children with cerebral palsy.

BACKGROUND: Children with cerebral palsy (CP) are at greater risk for a limited intellectual development than typically developing children. Little information is available which children with CP are most at risk. This study aimed to describe the development of non-verbal intellectual capacity of school-age children with CP and to examine the association between the development of non-verbal intellectual capacity and the severity of CP. METHODS: A longitudinal analysis in a cohort study was performed with a clinic-based sample of children with CP. Forty-two children were assessed at 5, 6 and 7 years of age, and 49 children were assessed at 7, 8 and 9 years of age. Non-verbal intellectual capacity was assessed by Raven's Coloured Progressive Matrices (RCPM). Severity of CP was classified by the Gross Motor Function Classification System, type of motor impairment and limb distribution. manova for repeated measurements was used to analyse time effects and time × group effects on both RCPM raw scores and RCPM intelligence quotient scores. RESULTS: The development of non-verbal intellectual capacity was characterised by a statistically significant increase in RCPM raw scores but no significant change in RCPM intelligence quotient scores. The development of RCPM raw scores was significantly associated with the severity of CP. Children with higher levels of gross motor functioning and children with spastic CP showed greater increase in raw scores than children with lower levels of gross motor functioning and children with dyskinetic CP. CONCLUSIONS: Children with CP aged between 5 and 9 years show different developmental trajectories for non-verbal intellectual capacity, which are associated with the severity of CP. The development of non-verbal intellectual capacity in children with less severe CP seems to resemble that of typically developing children, while children with more severe CP show a limited intellectual development compared to typically developing children.

The central role of IL-33/IL-1RL1 pathway in asthma: From pathogenesis to intervention.

Interleukin-33 (IL-33), a member of the IL-1 family, and its cognate receptor, Interleukin-1 receptor like-1 (IL-1RL1 or ST2), are susceptibility genes for childhood asthma. In response to cellular damage, IL-33 is released from barrier tissues as an 'alarmin' to activate the innate immune response. IL-33 drives type 2 responses by inducing signalling through its receptor IL-1RL1 in several immune and structural cells, thereby leading to type 2 cytokine and chemokine production. IL-1RL1 gene transcript encodes different isoforms generated through alternative splicing. Its soluble isoform, IL-1RL1-a or sST2, acts as a decoy receptor by sequestering IL-33, thereby inhibiting IL1RL1-b/IL-33 signalling. IL-33 and its receptor IL-1RL1 are therefore considered as putative biomarkers or targets for pharmacological intervention in asthma. This review will provide an overview of the genetics and biology of the IL-33/IL-1RL1 pathway in the context of asthma pathogenesis. It will discuss the potential and complexities of targeting the cytokine or its receptor, how genetics or biomarkers may inform precision medicine for asthma targeting this pathway, and the possible positioning of therapeutics targeting IL-33 or its receptor in the expanding landscape of novel biologicals applied in asthma management.

Cross-cultural validation and psychometric evaluation of the Dutch language version of the Children's Assessment of Participation and Enjoyment (CAPE) in children with and without physical disabilities.

OBJECTIVE: To assess construct validity, test-retest reliability and inter-interviewer reliability of the intensity dimension of the Children's Assessment of Participation and Enjoyment (CAPE) for children with and without physical disabilities in the Netherlands. SUBJECTS: In total, 232 children aged 6-18 years (110 male, 122 female) participated. Seventy-four children with various physical disabilities and 158 without a disability. DESIGN: Participants completed the CAPE and the Peabody Picture Vocabulary Test. In addition, parents of 142 children were interviewed using the Vineland Adaptive Behavior Scales and the Family Environment Scale. For 71 children test- retest reliability and for 60 children inter-interviewer reliability were assessed. Validity was examined by assessing differences in participation intensity in children with disabilities versus without a physical disability, boys versus girls, and younger versus older children. In addition, 13 hypotheses regarding participation, child and family variables were examined. RESULTS: Validity of the CAPE was supported by significant differences in participation for subgroups. Participation differed significantly in children with and without disabilities. Girls participated more in all activities. Older children participated more in social activities and self-improvement activities, younger children participated more in recreational activities. Validity of the CAPE was further supported with significant correlation coefficients in 8 out of 13 hypotheses. Both test-retest and inter-interviewer reliability were good to excellent. CONCLUSIONS: The findings indicate that the Dutch language version of the CAPE is a reliable and valid instrument to measure participation in recreation and leisure activities for children with and without physical disabilities aged 6-18 years.

Short-term changes in parents' resolution regarding their young child's diagnosis of cerebral palsy.

OBJECTIVE: This study aimed to describe changes in parents' resolution regarding their young child's diagnosis of cerebral palsy over a period of 1 year, and to describe the changes in strategies of resolution. METHODS: In this longitudinal study, 38 parents of children with cerebral palsy (mean age 18.4 months, SD = 1.1 at baseline) were followed with the Reaction to Diagnosis Interview, assessing their personal reactions to their child's diagnosis (i.e. resolution status). Changes at main and subclassification level of the Reaction to Diagnosis Interview were investigated using a binominal test. RESULTS: Twenty-nine parents (76%) were found to be stable with respect to their main resolution status (i.e. 'resolved' or 'unresolved'), while 24% of the parents either had changed from 'unresolved' to 'resolved' or in the opposite way. Furthermore, of the 28 parents who were classified as 'resolved' at both times, 15 (54%) had changed at subclassification level with respect to the specific strategies used. CONCLUSION: Resolution at a main level of parental reactions to their child's diagnosis was predominantly stable. Most parents were classified as 'resolved' at both baseline and follow-up assessment. However, more detailed analyses at subclassification level showed that most parents with a 'resolved' main status showed changing patterns of resolution strategies to their child's diagnosis, suggesting that resolution is an ongoing process.

Manual ability classification system for children with cerebral palsy in a school setting and its relationship to home self-care activities.

OBJECTIVE: Our aim in this study was to investigate the relationship between (a) the manual abilities of children with cerebral palsy (CP), assessed with the Manual Ability Classification System (MACS) in a school rehabilitation setting, and (b) the children's performance of self-care activities at home, assessed with the Pediatric Evaluation of Disability Inventory (PEDI). In addition, we assessed the interobserver reliability of the MACS. METHOD: Sixty-one children with CP were included (mean age = 10.3 yr, range = 5-14). The MACS was classified by 2 independent raters. The PEDI was scored in a structured interview. RESULTS: The Spearman correlation coefficient between the MACS and the self-care domain of the PEDI Caregiver Assistance Scale was high and statistically significant (r = .72). The interobserver reliability of the MACS was good (weighted kappa = .86). CONCLUSION: The MACS is a reliable instrument in a school environment and is related to the performance of daily life self-care activities at home.

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.

Goal Attainment Scaling in paediatric rehabilitation: a report on the clinical training of an interdisciplinary team.

BACKGROUND: Goal Attainment Scaling (GAS) is a responsive method for individual goal setting and treatment evaluation. However, current knowledge about its reliability when used in paediatric rehabilitation treatment is insufficient and depends highly on standardization of the GAS method. A training programme was developed to introduce GAS to a team of 27 professionals from five disciplines. The purpose of the paper is to share the experiences of professionals and parents during this training. METHODS: The training consisted of three 2-h general discussion sessions and intensive individual feedback from the study leader (i.e. the first author). Feedback was given until the GAS scales met predetermined criteria of ordinality, described specific, measurable, acceptable, realistic abilities and activities in a single dimension, used the 'can-do' principle and could be scored within 10 min. Therapists and parents were asked to give their opinion by completing a questionnaire. RESULTS: One hundred and fifteen GAS scales were developed and scored by professionals. The development of a GAS scale remained a time-consuming procedure, despite the training: 45 (SD = 27) minutes per scale. The content criteria of GAS were found to be useful by all participants. Common issues requiring revision of the initial scales were equal scale intervals, specificity, measurability and selection of a single variable. After the training, 70% of the therapists and 60% of the parents regarded GAS as a suitable tool to improve the quality of rehabilitation treatment. Examples of GAS scales developed by the various disciplines are presented and discussed. CONCLUSIONS: The experiences reported in this paper support the further development of training procedures for GAS before it can be used as an outcome measure in effect studies. The findings may be helpful in introducing GAS in the field of childhood disability.

Stress in parents of children with cerebral palsy: what sources of stress are we talking about?

BACKGROUND: Parents of children with cerebral palsy (CP) often experience high levels of stress. Little is known however on the different sources of stress parents experience. The purpose of the present study was to explore the relation between aspects of parental distress in the parenting role and the child's limitations in functional skills and the child's behavioural difficulties, in parents of children with CP. METHODS: A cross-sectional study among 42 parents of ambulatory children with CP (age 3-8 years; GMFCS levels I-III) was performed, using the Parenting Stress Index (PSI), the Paediatric Evaluation of Disability Inventory (PEDI) and the Vineland Adaptive Behaviour Scales (VABS). RESULTS: Regression analysis revealed that the PEDI Functional Skills and VABS Maladaptive behaviour scores explained 27% of the total variance in the PSI Parent domain total stress score. Maladaptive behaviour did significantly contribute to parental stress scores for the Parent domain subscales Attachment, Relationship with spouse, Depression, and, in particular, Sense of competence. CONCLUSIONS: Parents' functioning can be affected by behavioural aspects of the child with CP, and sense of competence could be an important variable in this relation. This emphasizes the importance of the development of specific interventions that support the family as a whole.

Comparing contents of functional outcome measures in stroke rehabilitation using the International Classification of Functioning, Disability and Health.

PURPOSE: To examine the content of outcome measures that are frequently used in stroke rehabilitation and focus on activities and participation, by linking them to the International Classification of Functioning, Disability and Health (ICF). Method. Constructs of the following instruments were linked to the ICF: Barthel Index, Berg Balance Scale, Chedoke McMaster Stroke Assessment Scale, Euroqol-5D, Functional Independence Measure, Frenchay Activities Index, Nottingham Health Profile, Rankin Scale, Rivermead Motor Assessment, Rivermead Mobility Index, Stroke Adapted Sickness Impact Profile 30, Medical Outcomes Study Short Form 36, Stroke Impact Scale, Stroke Specific Quality of Life Scale and Timed Up and Go test. Results. It proved possible to link most constructs to the ICF. Most constructs fitted into the activities and participation component, with mobility being the category most frequently covered in the instruments. Although instruments were selected on the basis of their focus on activities and participation, 27% of the constructs addressed categories of body functions. Approximately 10% of the constructs could not be linked. CONCLUSIONS: The ICF is a useful tool to examine and compare contents of instruments in stroke rehabilitation. This content comparison should enable clinicians and researchers to choose the measure that best matches the area of their interest.