Outcomes in adults with cerebral palsy: systematic review using the International Classification of Functioning, Disability and Health

Abstract

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’.

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

“…"Sensation of pain" was the most frequently addressed category of Body functions, which is in line with present knowledge showing that 71% of adults with CP experience pain in at least one part of the body (20). Also, in research among adults with CP, pain is the most commonly studied issue (12). This reflects the increased attention of professionals on pain during the last decade.…”

“…We found a large number of categories addressing Environmental factors compared with a recent systematic literature review on outcomes in adults with CP (12). The experts in our survey were notably concerned about person-environment interactions, whereas only a few published studies have explored these areas; revealing a gap in the scientific literature.…”

“…Emails were also sent to dedicated research groups and clinical expert groups for adults with CP in order to identify eligible experts in this field, such as the Lifespan Care Committee of the AACPDM. In addition, the names of corresponding authors were extracted from research studies on adults with CP from 2000 to 2017, identified in a previous systematic review (12). To create snowball sampling, all of the identified experts were asked to recommend other professionals from their network.…”

“…Nowadays, many organizations for childhood disabilities, such as the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), focus not only on children, but also on adults with CP. Moreover, the number of publications on the impact of CP in adulthood have increased over the past 20 years, addressing a variety of research topics (12).…”

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“…Postural asymmetry involving limited hip flexion, pelvic obliquity, trunk asymmetry, scoliosis, and windswept hip posture is common in adults with CP with low motor function (Ágústsson et al, 2018), described on the Gross Motor Function Classification System (GMFCS) as levels IV and V (Palisano, et al, 1997). These asymmetries typically occur alongside pain and spasticity, further adversely affecting function and participation (Benner et al, 2019).…”