The aim of the present thesis was to contribute to the improvement of patient care communication across the integrated care setting of children with cerebral palsy. Hereto, we followed two subsequent phases: 1) obtaining a better understanding of the experienced quality of patient care communication across the integrated care setting of cerebral palsy in three Dutch care regions; and 2) investigating the feasibility and usability of an eHealth application to improve patient care communication in these care regions.
PURPOSE: The aims of this study were to adapt the Gross Motor Function Measure-88 (GMFM-88) for children with Cerebral Palsy (CP) and Cerebral Visual Impairment (CVI) and to determine the test-retest and interobserver reliability of the adapted version.METHOD: Sixteen paediatric physical therapists familiar with CVI participated in the adaptation process. The Delphi method was used to gain consensus among a panel of experts. Seventy-seven children with CP and CVI (44 boys and 33 girls, aged between 50 and 144 months) participated in this study. To assess test-retest and interobserver reliability, the GMFM-88 was administered twice within three weeks (Mean=9 days, SD=6 days) by trained paediatric physical therapists, one of whom was familiar with the child and one who wasn't. Percentages of identical scores, Cronbach's alphas and intraclass correlation coefficients (ICC) were computed for each dimension level.RESULTS: All experts agreed on the proposed adaptations of the GMFM-88 for children with CP and CVI. Test-retest reliability ICCs for dimension scores were between 0.94 and 1.00, mean percentages of identical scores between 29 and 71, and interobserver reliability ICCs of the adapted GMFM-88 were 0.99-1.00 for dimension scores. Mean percentages of identical scores varied between 53 and 91. Test-retest and interobserver reliability of the GMFM-88-CVI for children with CP and CVI was excellent. Internal consistency of dimension scores lay between 0.97 and 1.00.CONCLUSION: The psychometric properties of the adapted GMFM-88 for children with CP and CVI are reliable and comparable to the original GMFM-88.
Background: To date, there is no evidence-based functional therapy programme available for children with both cerebral palsy (CP) and cerebral visual impairment (CVI). This study evaluates an individually targeted functional therapy programme adapted for these children experiencing difficulties with gross motor functioning and functional skills. Methods: Participants: Five children with CP and CVI, mean (SD) age 114 (52) months, participated in this study. Intervention: Participants were assigned to an 18-week functional therapy programme including nine weeks of individual functional therapy aimed at improving gross motor function followed by nine weeks of daily training of functional skills from the parents/caregivers. Analyses: The Related Samples Wilcoxon Signed Rank Test with a significance level of p<.05 was utilised to detect possible significant differences between the pre- and post-test. Results: According to the Goal Attainment Scaling (GAS), each child improved gross motor functioning. All the children also scored significantly higher in the section Functional Skills in the domains self-care and mobility as well as in the section Caregiver Assistance in the domain of self-care. Conclusion: This adapted individually functional therapy programme suggests improved gross motor functioning and functional skills in children with CP and CVI.
