ICF Core Sets for Cerebral Palsy in CY

Cerebral Palsy (CP) describes a group of development disorders of movement and posture commonly associated with other co-morbidities (e.g., sensory, cognitive, communication). CP is the most common cause of severe physical disability in childhood. The current estimate of incidence of CP is 2 to 2.5 per 1,000 live births in developed countries. CP is associated with a heterogeneous level of disability. The assessment of those challenges in functioning is at the core of clinical practice in CP, which is multidisciplinary by nature. There is currently neither a single questionnaire used in children with CP that covers the broad perspective that the ICF represents nor a consensus on the most appropriate instrument that assesses the effects of CP on everyday life. Furthermore, there is a lack of guidelines on how to select the most appropriate outcome measure to evaluate a specific intervention on this population, therefore it is difficult to compare results from different studies.

Initiated by the Children and Youth with Disability in Society (CYDiS) research unit at the University of British Columbia (Canada), and the ICF Research Branch, the Classification, Terminology and Standards Team at WHO have teamed up to tackle this issue by proceeding to develop the first version of the ICF Core Sets for children and youth (CY) with CP. The project has been run under the leadership of CYDiS and with the financial support of the Canadian Institutes for Health Research (CIHR) and the Sunny Hill Health Centre (SHHC) for children foundation.

The preparatory phase of the project included the following preparatory studies:
• A systematic literature review was performed to identify outcome measures used in children/youth with CP, and to identify the content addressed in those measurement tools using the ICF as a reference. See paper on the results of the literature review.
• A worldwide survey has been completed to gather the opinion of international experts who have an expertise in children with CP. See the paper on the results of the global expert survey.
• A qualitative study consisting of individual interviews of children with CP aged 8 to 18 years and caregivers, aimed at identifying relevant aspects of functioning and contextual factors from the children and caregivers’ perspective was conducted. See the paper on the results.
• To describe common problems experienced by children with CP from a clinical perspective, data was collected at multidisciplinary clinics at SHHC. The paper outlining the results has been published.

The information collected from these preparatory studies was presented at an international consensus conference, a multi-stage, well-established decision-making and consensus process where 26 experts from all over the world and with various professional and personal experience with CY with CP decided which ICF categories are to be included in the final ICF Core Sets for CP for CY.

Altogether 5 ICF Core Sets were developed:
* a comprehensive set covering all the developmental stages from birth up to 18 years of age consisting of 135 ICF categories
* a brief set consisting of 25 ICF categories that are common to describe CY with CP up to 18 years of age
* a 31-category brief set for CY with CP below 6 years of age
* a 35-category brief set for CY with CP ≥6 and <14 years of age
* a 37-category brief set for CY with CP ≥14 and 18 years of age

See publications section for the papers outlining the study results and the download section to access the ICF Core Sets as well as instructions on how to use the ICF Core Sets for children and youth with CP.
For more information, please go to website http://learn.phsa.ca/shhc/icf/ or contact Dr. Veronica Schiariti () directly.