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.

Update: April 2015

The preparatory phase of the project including the following preparatory studies has been completed:
  • A systematic literature review was performed to identify outcome measures used in children/youth (CY) with CP, and to identify the content addressed in those measurement tools using the ICF as a reference. Abstract.
  • A worldwide survey has been completed to gather the opinion of international experts who have an expertise in children with CP. Abstract.
  • A qualitative study consisting of individual interviews of children with CP aged 2 to 18 years and caregivers, aimed at identifying relevant aspects of functioning and contextual factors from the children and caregivers’ perspective was conducted. Abstract.
  • To describe common problems experienced by children with CP from a clinical perspective, data was collected from multidisciplinary clinics at Sunny Hill Health Centre, Vancouver. Abstract.

Each study provided unique perspectives on relevant aspects of functioning, validating the need to conduct the four independent studies. Audioslides. Abstract.

The information collected from these preparatory studies was presented at an international consensus conference that took place at Sunny Hill Health Centre for Children, Vancouver, Canada in June 2013. A multi-stage, well-established decision-making and consensus process where 26 experts, including a caregiver, from all over the world and with various professional and personal experiences with CY with CP decided which ICF categories were to be included in the final ICF Core Sets for CY with CP. Abstract.

At the consensus meeting, 5 ICF Core Sets were developed: 
The complete list of ICF categories included in the Core Sets, as well as the user instructions, will be posted online in July 2014. The publication has been accepted for publication in the journal of Developmental Medicine and Child Neurology. NEW RECORDED PODCAST

Please check the newly developed web-based educational tool, which illustrates how to apply the ICF Core Sets for children and youth with CP in day to day practice. NEW ICF educational e-tool.

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 at ICF_CerebralPalsy@cw.bc.ca.

Selected Presentations & Publications

Development of the ICF-CY Core Sets for children and youth with Cerebral Palsy. Schiariti V, O’Donnell M, Mâsse L, Cieza A, Klassen A, Armstrong R.

  • Schiariti V. ICF Core Sets for Children and Youth with Cerebral Palsy: Leading the Way to Comprehensive Functional Assessments. Invited ICF scholar presentation. International Workshop: Application of ICF/ ICF-CY Core Sets. The Taiwan Rehabilitation Academy Association. Dec 2014, Taipei, Taiwan.
  • Schiariti V. ICF Core Sets for Children and Youth with Cerebral Palsy: Validation using the national Taiwan databank of the FUNDES-Child of children with CP. Invited ICF scholar presentation. Dec 2014, Taipei, Taiwan.
  • ICF Core Sets for Children and Youth with Cerebral Palsy. Outcome measures working group. AACPDM. Sept 2014, San Diego, US.
  • Schiariti V. ICF Core Sets for Children and Youth with Cerebral Palsy: Leading the Way to Comprehensive Functional Assessments. Invited oral presentation. XVI Scientific & Training Symposium of the Polish Rehabilitation Society, "Rehabilitation according to biopsychosocial model. ICF". Sept 2014, Zamość, Poland.
  • Schiariti V. ICF Core Sets for Children and Youth with Cerebral Palsy - Clinical applications. Invited oral presentation. ICF Workshop. Step by Step association. Sept 2014,  Zamość, Poland.
  • ICF Core Sets for children and youth with CP: a consensus meeting. Oral presentation- Winner Research Grant. American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), October 2013, Milwaukee, US.
  • 'He does not see himself as being different': the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy. Poster presentation. American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), October 2013, Milwaukee, US. 
  • Identifying concepts contained in outcome measures used with children with CP using the ICF-CY Accepted for oral presentation. International Cerebral Palsy Conference, 2012. Pisa, Italy.
  • Towards the development of the ICF-CY Core Sets for children and youth with CP: global expert survey. Accepted for oral presentation. International Cerebral Palsy Conference, 2012. Pisa, Italy.
  • Identification of relevant areas of functioning in children and youth with Cerebral Palsy: an expert perspective. Poster presentation. Society for Pediatric Research, May 2012, Boston, US. Published in E-PAS2012:76A.
  • What outcome measures are used with children and youth with Cerebral Palsy. Poster presentation at 64th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), September 2010. Washington, DC. Published in Dev Med Child Neurol 2010 Sep; Vol. 52, 95.
  • Development of the ICF-CY core sets for children and youth with Cerebral Palsy. CIHI ICF Knowledge Collaborative 2010-March. Invited oral presentation. Toronto. Canada.