Developmental Trajectories of Mobility and Self-Care Capabilities in Young Children with Cerebral Palsy

Gorter, Jan Willem; Westers, Paul; Hanna, Steven; Verhoef, M.

doi:10.1016/j.jpeds.2013.11.070

Cited by 38 publications

(58 citation statements)

References 28 publications

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“…In addition, paediatric therapists may require more training about existing measures that are appropriate for this population, such as individualized goal setting (GAS and Canadian Occupational Performance Measure) and health‐related quality of life measures. Providing information about available outcome measures and test administration has been shown to have only modest effects on performance within clinical practice (Ketelaar, Gorter, Westers, Hanna, & Verhoef, ; King et al, ). To effectively change therapists' performance in frequency of testing and expand their repertoire of tools, research suggests that training would need to include a variety of teaching strategies to enhance translation of knowledge into practice and provide support from other experienced therapists as “knowledge brokers” (Menon, Korner‐Bitensky, Kastner, McKibbon, & Straus, ; Russell et al, ; Schreiber, Marchetti, Racicot, & Kaminski, ).…”

Section: Discussionmentioning

confidence: 99%

Use of outcome measures in children with severe cerebral palsy: A survey of U.K. physiotherapists

Knox

Vuoskoski

Mandy

2019

Physiotherapy Res Intl

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Objectives To investigate the use of outcome measures for children with cerebral palsy (CP) by paediatric physiotherapists (PTs) who are based in the United Kingdom, as limited research exists regarding their use in this population, and to explore therapists' use of measures within different Gross Motor Function Classification System (GMFCS) levels and for different types of CP. Methods A six‐item online survey was advertised through two paediatric therapy special interest groups inviting physiotherapists to participate. Descriptive statistics (range, frequencies, and percentages) were used to analyse survey data. Results Two hundred and seven physiotherapists returned completed survey questionnaires. One hundred and seventy‐six (85%) therapists reported using a wide variety of outcome measures (57). Eighty‐one per cent of therapists' responses for having “most difficulty” in identifying responsive outcome measures were for children with impaired mobility at GMFCS Levels IV–V and children with more significant body involvement (76%), for example, spastic quadriplegia or dyskinesia. Eighty‐six per cent of therapists' responses for having “greatest ease” of identifying responsive outcome measures were for children within GMFCS Levels I–III and for children with less significant body involvement (72%), for example, hemiplegia. The variety of outcome measures used by therapists with children within GMFCS IV–V was less (16). Conclusions The majority (85%) of the PTs surveyed used outcome measures with children with CP, but 81% perceived a difficulty in identifying responsive measures for children with more severe impairments who are classified as GMFCS IV–V. The reasons for this perceived difficulty warrant investigation and may suggest a need for training regarding relevant measures and/or a need to develop new measures for this group of children.

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Section: Discussionmentioning

confidence: 99%

Use of outcome measures in children with severe cerebral palsy: A survey of U.K. physiotherapists

Knox

Vuoskoski

Mandy

2019

Physiotherapy Res Intl

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“…Details of the recruitment process of the four age cohorts are described elsewhere . For the present study, eligible participants had a clinical diagnosis of CP without intellectual disability, no additional diagnosis affecting gross motor function, and they or a representative could understand interviews conducted in Dutch or Dutch language questionnaires.…”

Section: Methodsmentioning

confidence: 99%

Autonomy in participation in cerebral palsy from childhood to adulthood

Schmidt

Gorp

Wely

et al. 2019

Develop Med Child Neuro

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PERRIN PEdiatric Rehabilitation Research in the Netherlands PiP Participation in Perspective RTP Rotterdam Transition Profile AIM To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. METHOD Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). RESULTS In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/ sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation.INTERPRETATION This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function.

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“…This study was likely underpowered to detect clinically important associations between self‐care and manual ability in children with limited hand function as there was an underrepresentation of children with limited manual abilities at 30 months ( n =5 in MACS level IV, n =8 in MACS level V) . Another publication from the same project found distinct developmental trajectories of self‐care based upon gross motor ability as classified by the Gross Motor Function Classification System (GMFCS) . Development of self‐care was faster in children with higher gross motor function .…”

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confidence: 99%

“…Another publication from the same project found distinct developmental trajectories of self‐care based upon gross motor ability as classified by the Gross Motor Function Classification System (GMFCS) . Development of self‐care was faster in children with higher gross motor function . The estimated change in scaled scores of the PEDI self‐care domain per month between ages 18 months and 54 months was 0.74 for GMFCS level I, 0.62 for GMFCS level II, 0.54 for GMFCS level III, 0.42 for GMFCS level IV, and 0.31 for GMFCS level V …”

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confidence: 99%

Self‐care and manual ability in preschool children with cerebral palsy: a longitudinal study

Burgess

Boyd

Ziviani

et al. 2018

Develop Med Child Neuro

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Aim To describe longitudinal development of self‐care and its relationship to manual ability in children with cerebral palsy (CP) aged 18 months to 5 years across all functional abilities. Method This was a prospective longitudinal population‐based study of 290 children with CP (178 [61%] males, 112 [39%] females). Self‐care was assessed using the Pediatric Evaluation of Disability Inventory (PEDI). At 60 months (n=242), children were classified using the Manual Ability Classification System (MACS); 113 in level I (47%), 61 in MACS level II (25%), 24 in MACS level III (10%), 14 in MACS level IV (6%), and 30 in MACS level V (12%). Measures were taken at 18 months, 24 months, 30 months, 36 months, 48 months, and 60 months of age. Longitudinal analyses were performed using mixed‐effects linear regression models. Results Self‐care development achieved by 60 months was negatively associated with the severity of manual ability impairment. Distinct self‐care developmental trajectories were found with estimated changes in PEDI self‐care scaled scores per month: 0.61 for MACS level I, 0.46 for MACS levels II, 0.31 for MACS level III, 0.16 for MACS level IV, and 0.03 for MACS level V. Children classified in MACS level V had the lowest level of self‐care skills at 18 months and showed no progress in self‐care development. Interpretation This study reports rate of self‐care development in preschool children with CP. Self‐care performance was highest in children with greatest manual ability. Clinicians may use rates of change to predict or monitor self‐care performance. PEDI trajectories inform goal setting in discussions with families regarding expected levels of independence in self‐care. What this paper adds Distinct self‐care developmental trajectories in children with cerebral palsy were found according to Manual Ability Classification System (MACS) levels. Children in MACS levels IV and V with epilepsy did not show any significant change in self‐care. Children in MACS levels IV and V without epilepsy demonstrated small yet significant gains in self‐care performance.

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Developmental Trajectories of Mobility and Self-Care Capabilities in Young Children with Cerebral Palsy

Cited by 38 publications

References 28 publications

Use of outcome measures in children with severe cerebral palsy: A survey of U.K. physiotherapists

Use of outcome measures in children with severe cerebral palsy: A survey of U.K. physiotherapists

Autonomy in participation in cerebral palsy from childhood to adulthood

Self‐care and manual ability in preschool children with cerebral palsy: a longitudinal study

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