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.
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The aim of this study was to test the inter- and intraobserver reliability of the Physician Rating Scale (PRS) and the Edinburgh Visual Gait Analysis Interval Testing (GAIT) scale for use in children with cerebral palsy (CP). Both assessment scales are quantitative observational scales, evaluating gait. The study involved 24 patients ages 3 to 10 years (mean age 6.7 years) with an abnormal gait caused by CP. They were all able to walk independently with or without walking aids. Of the children 15 had spastic diplegia and 9 had spastic hemiplegia. With a minimum time interval of 6 weeks, video recordings of the gait of these 24 patients were scored twice by three independent observers using the PRS and the GAIT scale. The study showed that both the GAIT scale and the PRS had excellent intraobserver reliability but poor interobserver reliability for children with CP. In the total scores of the GAIT scale and the PRS, the three observers showed systematic differences. Consequently, the authors recommend that longitudinal assessments of a patient should be done by one observer only.
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PURPOSE: To investigate whether the adapted version of the Gross Motor Function Measure-88 (GMFM-88) for children with Cerebral Palsy (CP) and Cerebral Visual Impairment (CVI) results in higher scores. This is most likely to be a reflection of their gross motor function, however it may be the result of a better comprehension of the instruction of the adapted version.METHOD: The scores of the original and adapted GMFM-88 were compared in the same group of children (n=21 boys and n=16 girls), mean (SD) age 113 (30) months with CP and CVI, within a time span of two weeks. A paediatric physical therapist familiar with the child assessed both tests in random order. The GMFCS level, mental development and age at testing were also collected. The Wilcoxon signed-rank test was used to compare two different measurements (the original and adapted GMFM-88) on a single sample, (the same child with CP and CVI; p<0.05).RESULTS: The comparison between scores on the original and adapted GMFM-88 in all children with CP and CVI showed a positive difference in percentage score on at least one of the five dimensions and positive percentage scores for the two versions differed on all five dimensions for fourteen children. For six children a difference was seen in four dimensions and in 10 children difference was present in three dimensions (GMFM dimension A, B& C or C, D & E) (p<0.001).CONCLUSION: The adapted GMFM-88 provides a better estimate of gross motor function per se in children with CP and CVI that is not adversely impacted bytheir visual problems. On the basis of these findings, we recommend using the adapted GMFM-88 to measure gross motor functioning in children with CP and CVI.
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Background: Innovative technologies such as game consoles and smart toys used with games or playful approaches have proven to be successful and attractive in providing effective and motivating hand therapy for children with cerebral palsy (CP). Thus, there is an increased interest in designing and implementing interventions that can improve the well-being of these children. However, to understand how and why these interventions are motivating children, we need a better understanding of the playful elements of technology-supported hand therapy.Objective: This scoping review aims to identify the playful elements and the innovative technologies currently used in hand therapy for children with CP.Methods: We included studies that design or evaluate interventions for children with CP that use innovative technologies with game or play strategies. Data were extracted and analyzed based on the type of technology, description of the system, and playful elements according to the Lenses of Play, a play design toolkit. A total of 31 studies were included in the analysis.Results: Overall, 54 papers were included in the analysis. The results showed high use of consumer technologies in hand therapy for children with CP. Although several studies have used a combination of consumer technologies with therapeutic-specific technologies, only a few studies focused on the exclusive use of therapeutic-specific technologies. To analyze the playfulness of these interventions that make use of innovative technologies, we focused our review on 3 lenses of play: Open-ended Play, where it was found that the characteristics of ludus, such as a structured form of play and defined goals and rules, were the most common, whereas strategies that relate to paidia were less common. The most commonly used Forms of Play were physical or active form and games with rules. Finally, the most popular Playful experiences were control, challenge, and competition.Conclusions: The inventory and analysis of innovative technology and playful elements provided in this study can be a starting point for new developments of fun and engaging tools to assist hand therapy for children with CP.
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AIM To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD Five databases were searched. Instruments that quantified ‘attendance’ and/or ‘involvement’ aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines.
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AIM: The objectives of this study were (i) to develop two cerebral visual impairment motor questionnaires (CVI-MQ's) for children with cerebral palsy (CP): one for children with Gross Motor Function Classification System (GMFCS) levels I, II and III and one for children with GMFCS levels IV and V; (ii) to describe their face validity and usability; and (iii) to determine their sensitivity and specificity.BACKGROUNDS: The initial versions of the two CVI-MQ's were developed based on literature. Subsequently, the Delphi method was used in two groups of experts, one familiar with CVI and one not familiar with CVI, in order to gain consensus about face validity and usability. The sensitivity and specificity of the CVI-MQ's were subsequently assessed in 82 children with CP with (n = 39) and without CVI (n = 43). With the receiver operating curve the cut-off scores were determined to detect possible presence or absence of CVI in children with CP.RESULTS: Both questionnaires showed very good face validity (percentage agreement above 96%) and good usability (percentage agreement 95%) for practical use. The CVI-MQ version for GMFCS levels I, II and III had a sensitivity of 1.00 and specificity of 0.96, with a cut-off score of 12 points or higher, and the version for GMFCS levels IV and V had a sensitivity of 0.97 and a specificity of 0.98, with a cut-off score of eight points or higher.CONCLUSION: The CVI-MQ is able to identify at-risk children with CP for the probability of having CVI.
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Children with cerebral palsy must perform daily exercise which is a tedious and energy consuming task. Exergames can make this routine more engaging, which can increase the compliance of the patient. This research explores the feasibility of an exergame device called the Squid Monster. The device is the result of a research through design process, and it is designed to be played on smartphones in the home environment. It operates on the smartphone's integrated sensors and two external squeeze sensors, making it accessible and cost-effective. We conceptualize how the design can be supported using a machine learning adaptive difficulty system, aiming to increase flow and therapeutic adherence of the device. Ultimately, guidelines are provided to designers for future work in this field.
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Children with cerebral palsy must perform daily exercise which is a tedious and energy consuming task. Exergames can make this routine more engaging, which can increase the compliance of the patient. This research explores the feasibility of an exergame device called the Squid Monster. The device is the result of a research through design process, and it is designed to be played on smartphones in the home environment. It operates on the smartphone's integrated sensors and two external squeeze sensors, making it accessible and cost-effective. We conceptualize how the design can be supported using a machine learning adaptive difficulty system, aiming to increase flow and therapeutic adherence of the device. Ultimately, guidelines are provided to designers for future work in this field.
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The basic level of postural control is functionally active from early infancy onwards: young infants possess a repertoire of direction-specific postural adjustments. Whether or not direction-specific adjustments are used depends on the child's age and the nature of the postural task. The second level of control emerges after 3 months: children start to develop the capacity to adapt postural activity to environmental constraints. But the adult form of postural adaptation first emerges after adolescence. Children with cerebral palsy (CP) in general have the ability to generate direction-specific adjustments, but they show a delayed development in the capacity to recruit direction-specific adjustments in tasks with a mild postural challenge. Children with CP virtually always have difficulties in the adaptation of direction-specific activity. The limited data available on the effect of intervention on postural development suggest that intervention involving active trial and error experience may accelerate postural development in typically developing infants and may improve postural control in children with or at high risk for a developmental motor disorder.
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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.
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