Schizophrenia is a severe psychotic disorder characterized by a chronic and relapsing course with generally incomplete remissions, substantial functional decline, frequent psychiatric and medical co-morbidities and increased mortality. Schizophrenia is also associated with an enormous economic burden, the largest component of which derives from lost productivity. Global burden of disease analysis shows that schizophrenia is ranked among the top-ten leading causes of disease-related disability in the world.
Functioning and disability is increasingly being taken into account in assessing the impact of schizophrenia on the individual, as well as the effectiveness of treatments. Difficulties with everyday activities and low health-related quality of life have consistently been reported as being related to schizophrenia. There is also evidence that the level of impairment in individuals with schizophrenia is closely linked to the support provided by different aspects of the environment, not only the family and the community, but also social services, systems, and policies. The ICF offers a common framework for collecting data on functioning and disability of persons living with schizophrenia. To make the ICF with 1400+ categories more practical for routine use, ICF Core Sets have been developed for several health conditions including some mental disorders i.e. depression and bipolar disorders. An ICF Core Set has yet to be developed for schizophrenia. In 2013, the University of Barcelona and the ICF Research Branch together with a corsortium of researchers in Spain, the Netherlands and the United States have taken on the task of developing an ICF Core Set for schizophrenia.
The aim of the project to develop an ICF Core Set for schizophrenia is to identify indicators of functioning as represented by ICF categories that would enable us to better and more comprehensively understand schizophrenia. Having these "indicators" will provide the foundation for developing a valid and evidence-based questionnaire on functioning of persons with schizophrenia. Spearheaded by the University of Barcelona and supported by the Branch, the project team conducted four preparatory studies: Systematic literature review, Expert Survey, Multicentre empirical study, and the Qualitative study (Focus groups of patients, family members and professional caregivers conducted in Spain and in the United States).
The results of these preparatory studies were presented at an international consensus conference, a multi-stage, iterative, decision-making and consensus process that took place 12-14 May 2015 in Barcelona, Spain. At this consensus conference, schizophrenia experts from different countries worldwide and working in a broad range of professions decided which ICF categories should be included in the first version of the ICF Core Sets for schizophrenia. They based their decision on the 184 2nd level candidate categories that resulted from the preparatory studies.
The experts included 97 categories in the Comprehensive ICF Core Set and 25 categories in the Brief ICF Core Set for schizophrenia. See the Download section to get the ICF Core Sets. Details of each preparatory study as well as on the consensus conference will be reported in peer-reviewed publications by the end of 2015/mid-2016.