Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning.
Suzie Noten, Lorenzo A A Troenosemito, Chonnanid Limsakul and 6 others
PMID 33634853WHAT IT FOUND
Adults with cerebral palsy identified pain, fatigue, and mood issues as primary body problems.
They highlighted weak collaboration between disciplines and poor transition to adult services as major barriers. Those with intellectual disability reported distinct challenges in language and self-care.
Key findings
01Participants reported significant problems with mental functions like depression, sensory functions like pain, and neuromusculoskeletal functions like muscle tone and balance.
02Barriers to care were frequently linked to a lack of collaboration across disciplines and difficulties transitioning from paediatric to adult health services.
03Adults with intellectual disability reported distinct problems in mental function, specifically language reception and expression, and self-care activities like eating.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study was conducted only in the Netherlands, so findings may not reflect global cultural differences. Participants with intellectual disability were younger than those without, which may have influenced the types of problems reported. Caregivers acted as proxies for adults with intellectual disability, which may affect the accuracy of the reported perspective. Different interview techniques (focus groups vs. individual interviews) were used for the two subgroups.
Declared interests
The study was approved by the medical ethics committee of Erasmus University Medical Center. There is no explicit statement of funding sources or conflicts of interest in the provided text, but it is noted as non-U.S. government support.
The easy way to misread this
Do not interpret this as evidence that specific interventions improve these outcomes. This study identifies which ICF categories are relevant to adults with cerebral palsy to guide future core set development. It reports what patients experience, not what treatments work.