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- Noten, Suzie, et al.
(författare)
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An international clinical perspective on functioning and disability in adults with cerebral palsy
- 2022
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Ingår i: Disability and Health Journal. - : Elsevier BV. - 1936-6574 .- 1876-7583. ; 15:3
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Tidskriftsartikel (refereegranskat)abstract
- Background: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. Objective: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. Methods: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. Results: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I–V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I–V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. Conclusions: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.
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| 2. |
- Noten, Suzie, et al.
(författare)
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ICF Core Sets for the assessment of functioning of adults with cerebral palsy
- 2022
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 64:5, s. 569-577
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP). Method: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. Results: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies. Interpretation: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.
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