Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors
Chonnanid Limsakul, Suzie Noten, Melissa Selb, Henk J. Stam, Wilma M.A. van der Slot, Marij E. Roebroeck
Department of Rehabilitation Medicine, Erasmus University Medical Center, 3000CA Rotterdam, The Netherlands. E-mail: email@example.com
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 func-tioning 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.
Nowadays 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.
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