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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 569-577 |
| Number of pages | 9 |
| Journal | Developmental Medicine and Child Neurology |
| Volume | 64 |
| Issue number | 5 |
| DOIs | |
| State | Published - May 2022 |
Funding
Members of the consensus group for the ICF Core Set for adults with CP are as follows: Carolina Ayllón (Department of Physical and Rehabilitation Medicine, Hospital de Niños Sor María Ludovica, Centro de Rehabilitación Infantil Ambulatoria, La Plata, Argentina); Júlia Ballester-Plané (Departament de Psicologia Clínica i Psicobiologia, Universitat de Barcelona, Institut de Neurociències, Universitat de Barcelona, Institut de Recerca Sant Joan de Déu, Barcelona, Spain); David Berbrayer (Division of Physical Medicine and Rehabilitation, University of Toronto, Sunnybrook Health Sciences Centre, Toronto, ON, Canada); Nalan Capan (Department of Physical Medicine and Rehabilitation, Faculty of Medicine, Istanbul University Istanbul, Istanbul, Turkey); Henry G Chambers (Department of Orthopaedic Surgery, University of California, Department of Orthopaedics, Rady Children’s Hospital, San Diego, CA, USA); Patricia M M B Fucs (Department of Orthopaedics and Traumatology, Santa Casa Medical School and Hospitals, São Paulo, Brazil); Philippe Gallien (Pôle Saint-Hélier, Rennes, France); Susan Geboers (Durham College, Bowmanville, ON, Canada); Abderrazak Hajjioui (Clinical Neurosciences Laboratory, Faculty of Medicine and Pharmacy, University Sidi Mohamed Ben Abdellah Fez, Morocco); Patricia C Heyn (Department of Physical Medicine and Rehabilitation, Cochrane US University of Colorado Anschutz Medical Campus Affiliated Center, School of Medicine, University of Colorado Anschutz Medical Campus, USA); Sander R Hilberink (Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, the Netherlands); Kirti Joshi (Department of Physiotherapy, Ramaiah Medical College, Bangalore, India); Nelleke G Langerak (Neuroscience Institute and Division of Neurosurgery, Faculty of Health Sciences, University of Cape Town, South Africa); Christina M Marciniak (Department of Physical Medicine and Rehabilitation and Department of Neurology, Northwestern University Feinberg School of Medicine, Shirley Ryan AbilityLab, Chicago, IL, USA); Prue E Morgan (Department of Physiotherapy, Monash University, Melbourne, Australia); Eduardo del Rosario (NYU Langone Orthopedic Hospital, Hassenfeld Children’s Hospital, Center for Children, NYU Rory Meyers College of Nursing, New York, Molloy College Barbara H. Hagan School of Nursing, Rockville Centre, NY, USA); Natascha van Schaardenburgh (Bureau VolZin, Rotterdam, the Netherlands); Theresa Schölderle (Clinical Neuropsychology Research Group, Institute for Phonetics and Speech Processing, Ludwig-Maximilians-University, Munich, Germany); Deepthi N Shanbhag (Department of Community Health, St. John’s Medical College, Bengaluru, Karnataka, India); Ivan Y W Su (SAHK, North Point, Hong Kong); Anne Trinh (Hudson Institute of Medical Research, Monash Health, Clayton, Monash University, Clayton, VIC, Australia); and Laura K Vogtle (Department of Occupational Therapy, University of Alabama at Birmingham, Birmingham, AL, USA). We thank Beat Gurtner (Swiss Paraplegic Research, Nottwil, Switzerland) for his efforts in developing the data management program we used to facilitate the consensus process. This study was funded by Rijndam Rehabilitation, Rotterdam, the Netherlands. The work of Elisabet Rodby-Bousquet was funded by the Swedish Research Council for Health, Working Life and Welfare (FORTE, grant no. 2018-01468). We thank Beat Gurtner (Swiss Paraplegic Research, Nottwil, Switzerland) for his efforts in developing the data management program we used to facilitate the consensus process. This study was funded by Rijndam Rehabilitation, Rotterdam, the Netherlands. The work of Elisabet Rodby‐Bousquet was funded by the Swedish Research Council for Health, Working Life and Welfare (FORTE, grant no. 2018‐01468).
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Developmental Neuroscience
- Clinical Neurology