a on behalf of the PERRIN DECADE Study Group OBJECTIVES: Describe development curves of motor and daily activity performance in individuals with cerebral palsy (CP). METHODS: Participants with CP aged 1 to 20 years at baseline (n = 421) and Gross Motor Functioning Classification System (GMFCS) levels I to V (27% of participants with intellectual disability [ID]) were longitudinally assessed up to a 13-year follow-up period. Motor and daily activity performance were assessed using the relevant subdomains of the Vineland Adaptive Behavior Scales survey. Nonlinear mixed effects analyses were used, estimating the limit (average maximal performance level) and the age by which individuals reached 90% of the limit (age 90). RESULTS: Limits of motor performance decreased with each lower functional level. Age 90 for motor performance was reached at ∼6 to 8 years of age in children with GMFCS levels I to III, and at younger ages in those with lower functional levels. Limits of daily activity performance did not differ between individuals without ID with GMFCS levels I to III. The age 90 s of daily activities were reached between 11 and 14 (personal), 26 and 32 (domestic), and 22 and 26 years of age (community). Individuals with ID reached lower daily activity performance limits earlier. CONCLUSIONS: Individuals with CP continue to develop motor performance after gross motor capacity limits are reached. For those without ID, daily activities continue to develop into their 20s. Individuals who are severely affected functionally have the least favorable development of motor performance, and those with ID have the least favorable development of daily activity performance.

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.

AimTo identify meaningful outcomes of children and their caregivers attending a paediatric brain centre.MethodWe compiled a long list of outcomes of health and functioning of children with brain‐related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent‐caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked ‘very important’ by 70% or more of the participants.ResultsWe identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty‐three surveys were completed by children (n = 4), caregivers (n = 24), and parent‐caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well‐being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self‐care, interpersonal relationships). Parent‐caregiver concerns and environmental factors were newly identified outcomes.InterpretationChildren and parent‐caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability.

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