Developmental Neurosciences
& Child Health
Development of ICF Core Sets
for Children and Youth with Cerebral Palsy
A World Health Organization Collaboration Project
The ICF and ICF-CY
The WHO’s International Classification of Functioning, Disability and Health (ICF), has provided a universally accepted framework to classify and describe functioning, disability and health in people with any health condition. Those supporting individuals with disabilities have applauded the ICF, seeing its value in considering the strengths and challenges of individuals and populations and its value as a clinical, research and epidemiologic tool. In 2007, the WHO has added the ICF children and youth (ICF-CY) version.
The ICF framework is based on a bio-psycho-social model covering functioning and disability with its components Body Structure, Body Functions, Activities and Participation as well as identifying the need to consider context, represented through Personal and Environmental Factors.
About the ICF Core Sets and How They are Developed
Since the ICF-CY classification system contains 1685 categories, it is an excellent reference tool and overarching framework; however, the many categories cannot easily be used in clinical practice or clinical research. In order to make the ICF-CY more user friendly for clinical work and clinical research, tools such as the ICF “core sets” have to be created. All the core sets developed to date have been developed with a focus on adults.
In creating a core set, a specific process has been developed by the WHO. A series of preparatory projects are undertaken to identify relevant functional areas. The information compiled is subsequently used to inform an international consensus process. This consensus process involves the perspectives of diverse groups from around the globe. All relevant perspectives are considered including the very important perspectives of clients, including children and families.
The overview of the development of ICF core sets for children and youth with cerebral palsy is presented below:
 
Cerebral Palsy
Cerebral Palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication and behavior; by epilepsy; and by secondary musculoskeletal problems. CP is the most common cause of severe physical disability in childhood. The current estimate incidence of CP is 2 to 2.5 per 1,000 live births in developed countries.
Objective
The overarching objective of the project is to develop lists of ICF-CY categories specific for CP with the goal of specifying what is relevant to study and report for children and youth with CP. This is happening through an open consensus process in cooperation with the WHO.
Methods
The project consists of four independent studies and an ICF-CY core set consensus conference. ICF-CY categories relevant for children and youth with CP are identified by means of:
Consensus about areas that have to be part of a comprehensive and of a brief ICF-CY core set for children and youth with CP will be reached in a final ICF-CY core sets consensus meeting. Subsequent field testing will be necessary to validate these first versions of ICF-CY core sets.
Importance
ICF core sets are useful standards for research, clinical practice and teaching. They are useful for the description of functional strengths and challenges, resources and needs, the assignment to professional interventions and the evaluation of treatment outcome. They facilitate the multi- and interdisciplinary team work. Finally, they may be used for the prediction of resource utilization and the development of reimbursement algorithms.
Learn more
The specific research project and the full program of research related to the development of the ICF core sets for children and youth with CP is being conducted by Dr. Veronica Schiariti, Dr. Maureen O’Donnell, Dr. Robert Armstrong from the University of British Columbia, Dr. Anne Klassen from McMaster University and Dr. Alarcos Cieza from the ICF Research Branch of WHO Collaborating Center for the Family of International Classifications at the Ludwig-Maximilian University in Germany.
The development of ICF core sets for children and youth with CP is an inclusive and open process. If you have questions about the project, please contact Veronica Schiariti.
Presentations & Publications
Content comparison of health related quality of life measures for cerebral palsy based on the international classification of functioning (ICF-CY). Schiariti V, Fayed N, Cieza A., Klassen A, O ’Donnell M.
- Poster Presented at the 86th Annual Conference meeting of the Canadian Pediatric Society, June 2009, Ottowa, ON. Published in Paediatr Child Health 2009; 14 (Suppl A)27A.
- Accepted for Free Paper presentation at the 63rd Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). September 2009, Scottsdale, AZ.
- Accepted for poster presentation at the 50th Annual Meeting of the European Society for Paediatric Research. October 2009, Hamburg, Germany.
« Back to
Children and Youth with Disabilities in Society (CYDiS)
Last updated:
03/11/2010
|
