Activity Performance Curves of Individuals With Cerebral Palsy

Develop Med Child Neuro

Voorman

et al. 2019

AIM To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). METHOD This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE studylongitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age 90 ) using nonlinear mixed-effects modeling.RESULTS One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages 90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large.INTERPRETATION Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development.

Section: Discussionmentioning

confidence: 78%

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confidence: 99%

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confidence: 99%

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Development curves of communication and social interaction in individuals with cerebral palsy

Tan

Develop Med Child Neuro

Voorman

et al. 2019

“…11 Former participants of the cohorts were recruited through information letters. 9,10 In total, 189 participants were included: 143 participated in the longterm follow-up studies and 46 PERRIN 16-24 participants who did not participate in the 13-year follow-up were included from the existing PERRIN database (Appendix S1, online supporting information). Of all participants, 90 were assessed longitudinally either up to 4 (n=35) or 13 years (n=55).…”

Section: Participantsmentioning

confidence: 99%

Autonomy in participation in cerebral palsy from childhood to adulthood

Schmidt

Develop Med Child Neuro

Wely

et al. 2019

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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.

“…In addition, their development of new participation skills, for example, in domestic life, may be more challenging, since we know from another study that those with lower gross motor function had more difficulty and needed assistance in participation as they develop into adult roles [6]. Finally, individuals with ID are known to show less favourable development of participation, with development stabilising at relatively low levels during childhood [30]. Therefore, screening children with CP for low motor capacity, low manual ability, ID, and epilepsy may help the timely identification of those at risk for lower participation in future domestic life and/or interpersonal relationships.…”

Section: Risk Factorsmentioning

confidence: 99%

Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study

Disability and Rehabilitation

Roebroeck

Eck

et al. 2019

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Purpose:To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP). Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9-13 years) included 67 young adults with CP (age 21-27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05). Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R 2 ¼ 67-87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R 2 to 79-90%. Conclusions: Childhood factors account for 79-90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation. ä IMPLICATIONS FOR REHABILITATIONChildhood risk factors for limited participation in domestic life and interpersonal relationships as a young adult with CP are ID, epilepsy, low manual ability, low motor capacity, and low activity & participation levels. In line with current practice, this study confirms the importance of addressing gross and fine motor skills in children with CP for their future participation in domestic life. In addition, results suggest that addressing communication and social skills during paediatric rehabilitation may optimise future participation in interpersonal relationships. ARTICLE HISTORY