The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway.

PURPOSE: Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. MATERIALS AND METHODS: A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. RESULTS: Of the respondents, 64-70% report that they assess cognition in children with all degrees of motor impairment, and 70-80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. CONCLUSIONS: The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.Implications for rehabilitationChildren with cerebral palsy (CP) have increased risk of cognitive impairments that require intervention.Assessments of cognition should be offered to all children with CP because the nature of cognitive impairments may vary.Introducing a follow-up protocol of how and when to perform cognitive assessments is a step towards ensuring equal access to the services for all children with CP.A quality improvement project might be a viable method for implementing a protocol into everyday clinical practice.

A Swedish cultural adaptation of the participation questionnaire Functional Scale of the Disability Evaluation System - Child version.

PURPOSE: The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context. METHODS: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. RESULTS: The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. CONCLUSIONS: The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.Implications for rehabilitationParticipation is of great importance for children's functioning, well-being, and development.Cultural validation of well-established participation questionnaires is a priority and questions about important aspects of participation need to be included.Interviews with children/youth and caregivers guided revisions to reach relevance, comprehensiveness, and comprehensibility of the Swedish FUNDES-Child (FUNDES II-SE).Children/youths, caregivers, and others may increase their awareness concerning the child's/youth's participation by responding to the questionnaire.

Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP.

BACKGROUND: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. OBJECTIVE: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. METHODS: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. RESULTS: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. CONCLUSIONS: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13883.

Health-related quality of life of children and adolescents with functional disabilities in a northern Swedish county.

PURPOSE: Health-related quality of life (HRQoL) studies in children and adolescents with disabilities tend to report lower self-reported health than in the typical population. However, reports are not always consistent and HRQoL appears to vary depending on diagnosis, cultural setting and clinical context. The aim of this study was to explore HRQoL in children and adolescents with various disabilities in Västerbotten County, Sweden. METHODS: A total of 175 children and adolescents [57 girls, 118 boys; mean age 11.7 years (range 7-17 years)] divided into four different diagnostic groups (intellectual disabilities, autism spectrum disorders, movement disorders and hearing disabilities) participated in the study. The EuroQol Five Dimensions Health Questionnaire, Youth version (EQ-5D-Y) was used as HRQoL measure. RESULTS: Significant differences in various EQ-5D-Y dimensions between the different diagnostic groups were found, but no differences in overall health status. HRQoL in children and adolescents with hearing disabilities was found similar to the typical child population in Sweden whereas children and adolescents with other diagnoses reported evidently more problems. CONCLUSIONS: Findings suggest that there is an increased risk for children with functional disabilities other than hearing disabilities in northern Sweden to experience difficulties in various health domains and lowered general health.

Self-care and mobility skills in children with cerebral palsy, related to their manual ability and gross motor function classifications.

AIM: The aim of this study was to investigate the acquisition of self-care and mobility skills in children with cerebral palsy (CP) in relation to their manual ability and gross motor function. METHOD: Data from the Pediatric Evaluation of Disability Inventory (PEDI) self-care and mobility functional skill scales, the Manual Ability Classification System (MACS), and the Gross Motor Function Classification System (GMFCS) were collected from 195 children with CP (73 females, 122 males; mean age 8 y 1 mo; SD 3 y 11 mo; range 3-15 y); 51% had spastic bilateral CP, 36% spastic unilateral CP, 8% dyskinetic CP, and 3% ataxic CP. The percentage of children classified as MACS levels I to V was 28%, 34%, 17%, 7%, and 14% respectively, and classified as GMFCS levels I to V was 46%, 16%, 15%, 11%, and 12% respectively. RESULTS: Children classified as MACS and GMFCS levels I or II scored higher than children in MACS and GMFCS levels III to V on both the self-care and mobility domains of the PEDI, with significant differences between all classification levels (p<0.001). The stepwise multiple regression analysis verified that MACS was the strongest predictor of self-care skills (66%) and that GMFCS was the strongest predictor of mobility skills (76%). A strong correlation between age and self-care ability was found among children classified as MACS level I or II and between age and mobility among children classified as GMFCS level I. Many of these children achieved independence, but at a later age than typically developing children. Children at other MACS and GMFCS levels demonstrated minimal progress with age. INTERPRETATION: Knowledge of a child's MACS and GMFCS level can be useful when discussing expectations of, and goals for, the development of functional skills.

Evaluation of single event multilevel surgery and rehabilitation in children and youth with cerebral palsy--A 2-year follow-up study.

PURPOSE: This study evaluated multilevel surgery and rehabilitation with functional measures and health related quality of life (HRQOL) of children and youth with cerebral palsy (CP). In addition this study evaluated parent's satisfaction with care. METHOD: A prospective single-subject study with AB design and 2-year follow-up, included 11 children between 8 and 18 years old with CP, Gross Motor Function Classification System I-III. Visual analyses were used to present physical function with Physical Cost Index (PCI). Descriptive statistics were used to present number of children with a clinically important change in Gross Motor Function Measure (GMFM), self-reported walking ability, and HRQOL with child health questionnaire (CHQ). RESULTS: PCI showed a trend of lower energy cost during gait in six children and GMFM was unchanged for 10 children and improved for one child. Walking ability was improved in 10 children. Gait distance increased in all 11. Both physical and psychosocial dimensions of CHQ improved in six of nine (two missing data). Expectations of outcomes were fulfilled in seven and partly fulfilled in four. Satisfaction with care was fulfilled in 10 of 11. CONCLUSION: Self-reported walking ability improved after multilevel surgery and intensive rehabilitation. This result was partly supported by lower energy cost and improved HRQOL. Expectations and satisfaction were fulfilled for the majority of children.

Parents' perceptions of the quality of two intensive training programmes for children with cerebral palsy.

This study explored parents' perceptions of the service quality of two intensive training programmes and the association between perceived service quality and predefined influential factors. Parents of 31 males and 19 females with spastic, dyskinetic, and ataxic cerebral palsy (mean age 8 y 7 mo [SD 3 y 7 mo]; range 3-16 y), and Gross Motor Function Classification System Level I n=1; Level II n=9; Level III n=8; Level IV n=20; and Level V n=12 were included. Functional outcome had been evaluated previously with the clinical measures Gross Motor Function Measure-88, the Pediatric Evaluation of Disability Inventory-Functional Skills, and the Self-reported Individualized Goal Measure, before and after a 4-week intensive training period (ITP). The two training programmes used were Lemo and Move&Walk. After the ITP, a telephone interview was performed with the same cohort, using the Patient perspective On Care and Rehabilitation process. Data on previous experiences, expectations, and severity of disability were collected before the ITP, and data on achieved expectations afterwards. Previous experiences of the training programme, high expectations of improvements, achieved expectations, gross motor capacity improvements, and intensive training at the child and youth rehabilitation centre were associated with increased probability of fulfillment of needs. Severity of disability was associated with decreased probability of fulfillment of needs and functional improvements. Most parents perceived high service quality, and achieved expectations were influenced by high service quality rather than by perceived functional improvements. This suggests that needs other than functional improvements must be explained and acknowledged.

Effectiveness of intensive training for children with cerebral palsy--a comparison between child and youth rehabilitation and conductive education.

OBJECTIVES: To compare the short-term effectiveness of 1 intensive training period in child and youth rehabilitation with Move&Walk conductive education and describe the effects of 1 intensive training period in terms of changes at 1 year. The amount and influence of additional consumption of training during the 1-year follow-up was also analysed. DESIGN: Quasi-experimental with 2 groups: Lemo (n=23) and Move&Walk (n=29). PATIENTS: A total of 52 children with cerebral palsy, age range 3-16 years. METHODS: Data included repeated measures with Gross Motor Function Measure (GMFM) and Pediatric Evaluation of Disability Inventory-Functional Skills (PEDI-FS). Data on additional consumption of training was collected at the 1-year follow-up. RESULTS: There was no difference in proportion of change on the clinical measures between the training programmes, except for a higher proportion of improvement on the GMFM total score in Lemo. At the group level, small improvements were shown on GMFM and PEDI FS in the short-term and on PEDI FS only at 1 year. A higher proportion of children who participated in repeated intensive training periods showed improved social functioning. CONCLUSION: No major differences were shown between the 2 training programmes. One intensive training period facilitated small improvements in gross motor function. The majority of children had a high consumption of training during the 1-year follow-up and the added value of repeated intensive training periods was limited.