Aim In the context of the development of an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy (CP), this systematic review sought to identify the outcome measures used in studies on adults with CP, to examine their content using the ICF as a reference, and to demonstrate the most studied areas in this population. Method Embase, MEDLINE, Web of Science, PsycINFO, CINAHL, Cochrane, and Google Scholar were searched for studies on adults with CP published between 2000 and 2017. Meaningful concepts of commonly used outcome measures were linked to the ICF, and frequencies of resultant ICF categories were explored. Results In 274 included articles, 332 outcome measures were identified of which 155 were commonly used. In total, 4409 meaningful concepts were linked to the ICF. The component ‘Activities and participation’ included the most frequent categories, followed by ‘Body functions’. The most frequent categories were b280 ‘Sensation of pain’ (37.6%), d450 ‘Walking’ (33.3%), and d850 ‘Remunerative employment’ (27.5%). Interpretation The broad range of ICF categories identified in this systematic review emphasizes the heterogeneity of functioning and disability in adults with CP. The current results specifically reflect the researchers’ perspective and will serve as candidate categories to consider in the development of an ICF Core Set for adults with CP. What this paper adds Outcomes studied in adults with cerebral palsy are captured in varying International Classification of Functioning, Disability and Health (ICF) categories. Activities and participation were studied more frequently than body functions and structures. Mobility, employment, and self‐care were most frequent within ICF's ‘Activities and participation’ component. Pain and neuromusculoskeletal and movement‐related functions were most frequent within ‘Body functions’.

Aim To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP. Method We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers. Results In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I–IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III–V) participated. We identified 132 unique second‐level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services. Interpretation Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.

LAY ABSTRACTNowadays the population of persons with cerebral palsy is mostly at adult age. The clinical care and research for this understudied population would benefit from standardized outcomes. Therefore, we aim to develop an International Classification of Functioning, Disability and Health Core Set for adults with cerebral palsy, integrating knowledge from several perspectives. One of these perspectives is the experts' view, which we studied in a survey among professionals working with adults with cerebral palsy worldwide. Professional experts indicated over 200 relevant aspects of functioning for adults with cerebral palsy, covering a broad variety. They most often reported problems for adults with cerebral palsy in mobility or having pain, and on the hindrance of construction and technology of public or private buildings for their functioning. The present results emphasize the known heterogeneity of cerebral palsy and the large number of impairments and activity limitations in adulthood. Also, experts underlined the importance of person-environment interactions, by frequently naming environmental factors.Objective: To identify areas of functioning in adults with cerebral palsy that are considered relevant by experts, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy. Participants: Experts from various professional backgrounds worldwide who had experience working with adults with cerebral palsy for ≥2 years and were able to complete the survey in the English language. Methods: A cross-sectional study using an international internet-based survey. The experts were asked to address relevant areas of functioning in adults with cerebral palsy. These areas of functioning were then linked to the ICF and the frequencies analysed. Results: A total of 126 experts from 32 countries completed the survey. From the responses, 217 unique second-level ICF categories were identified. The three most frequently mentioned categories were "design, construction and building products and technology of buildings for public use (e150, 77%) and private use" (e155, 67%), followed by "sensation of pain" (b280, 62%). Conclusion: The broad diversity of ICF categories reported by the experts emphasize the known heterogeneity of cerebral palsy and the variety of functioning in adulthood. They also reported on many environmental factors, illustrating the importance of person-environment interactions. These findings provide information about relevant issues for use in developing an ICF Core Set for adults with cerebral palsy.

Objectives: This systematic review and meta-analysis was designed to determine the overall mean blood pressure and prevalence of hypertension among a representative sample of adults living with cerebral palsy by combining individual participant data. Additional objectives included estimating variations between subgroups and investigating potential risk factors for hypertension. Methods: Potential datasets were identified by literature searches for studies published between January 2000 and November 2017 and by experts in the field. Samples of adults with cerebral palsy ( n ≥ 10, age ≥ 18 years) were included if blood pressure data, cerebral palsy-related factors (e.g. cerebral palsy subtype), and sociodemographic variables (e.g. age, sex) were available. Hypertension was defined as at least 140/90 mmHg and/or use of antihypertensive medication. Results: We included data from 11 international cohorts representing 444 adults with cerebral palsy [median (IQR) age of the sample was 29.0 (23.0–38.0); 51% men; 89% spastic type; Gross Motor Function Classification System levels I–V]. Overall mean SBP was 124.9 mmHg [95% confidence interval (CI) 121.7–128.1] and overall mean DBP was 79.9 mmHg (95% CI 77.2–82.5). Overall prevalence of hypertension was 28.7% (95% CI 18.8–39.8%). Subgroup analysis indicated higher blood pressure levels or higher prevalence of hypertension in adults with cerebral palsy above 40 years of age, men, those with spastic cerebral palsy or those who lived in Africa. BMI, resting heart rate and alcohol consumption were risk factors that were associated with blood pressure or hypertension. Conclusion: Our findings underscore the importance of clinical screening for blood pressure in individuals with cerebral palsy beginning in young adulthood.