Development of ICF Core Sets for Traumatic Brain Injury (TBI)
A major issue for professionals working with traumatic brain injury (TBI) concerns the large variation in currently available measures to address function and disability in TBI. There is little standardization in the use of these instruments and therefore, comparison of data is quite difficult. The objective of the ICF Core Set development project for persons with TBI was to identify relevant categories which comprehensively describe and measure the spectrum of limitations in functioning of persons with TBI. The project was a collaborative effort between the Guttmann Institute, the ICF Research Branch, the World Health Organisation (WHO) and the International Society of Physical Medicine and Rehabilitation (ISPRM). The enormous organization of completing all 4 preliminary studies culminating in the consensus conference which took place in Barcelona from 26-28 March 2010 was under the leadership of the Brain Injury Unit at the Guttmann Institute.
The preparatory phase of the project included the following studies:
- A systematic literature review was performed to identify parameters and outcomes reported in studies published from 2002-2007 involving persons with TBI as well as to identify and quantify the concepts contained in these parameters and outcomes using the ICF as a reference.
- A qualitative study with persons with TBI and their caregivers (14 focus groups with persons with TBI, 14 focus groups with caregivers and 4 interviews) was performed at the Guttmann Institute (Spain) and 24 centres of the Italian Network aimed to identify concepts of functioning and health important to persons with TBI using the ICF as a reference.
- An internet-based expert survey was performed to gather the opinion of an international pool of 107 experts (physicians, nurses, social workers, physiotherapists, occupational therapists, speech therapists and neuropsychologists) on their clinical experience about the most relevant and typical areas to be considered in persons with TBI.
- A multicentre cross-sectional study with 500 patients was performed at 4 study centres in Australia, Italy, Norway and Spain to describe functioning and health of persons with TBI using standardized questionnaires to assess the subjective appraisal of health and well-being using the ICF.
The information collected from these preparatory studies was presented at the March 2010 international consensus conference, a multi-stage, well-established decision- making and consensus process. At this consensus conference, 23 TBI experts from 8 health professions (physicians, neuropsychologists, physiotherapists, occupational therapists, nurses, psychologists, speech therapists, and social workers) and from 9 countries decided which ICF categories are to be included in the ICF Core Sets for TBI.
139 ICF categories were selected for inclusion in the Comprehensive ICF Core for TBI. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment (e.g. in a rehabilitation setting). Out of the 139 Comprehensive ICF Core Set categories, 23 ICF categories were selected for the Brief ICF Core for TBI. The Brief ICF Core Set can be used in settings in which a brief description and assessment of functioning of a person with TBI is sufficient (e.g. primary care or in research).