To describe and rate the consequences of spinal cord injury (SCI), a wide range of measures has been used. Unfortunately, there is a wide variation in currently available measures, including variation in underlying dimensions and terminological confusion as well as difficulty in carrying over data from one episode of care - emergency, medical, rehabilitative, outpatient and community clinical care - to another episode of care involving a different clinical focus. To address this clinical information need, the project aimed to develop ICF Core Sets to comprehensively describe functioning and disability of individuals with SCI.
A key issue when developing ICF Core Sets for SCI was the decision of what core sets should be developed for, i.e. which situation and which purpose. This relates to the fact that SCI is initially an acute condition and subsequently a chronic condition that has many different consequences. Therefore, ICF Core Sets for SCI need to address the prototypical spectrum of problems encountered along the continuum from the acute situation to rehabilitation and throughout the lifetime for persons with SCI living in the community. Thus, ICF Core Sets for SCI for the early post-acute context and for the long-term context have been developed. The early post-acute context starts and ends with the comprehensive rehabilitation. The long-term context starts after the early post-acute.
The project was a cooperative effort between the ICF Research Branch, the Classification, Assessment and Terminology team and the Disability and Rehabilitation team at the World Health Organisation (WHO), the International Spinal Cord Society (ISCoS) and International Society for Physical and Rehabilitation Medicine (ISPRM) and partner institutions around the world.
In the preparatory phase of the project:
- A systematic literature review was performed to identify outcome parameters reported in published studies on individuals with SCI in the early post-acute and long-term context, and to identify and quantify the concepts of the reported parameters using the ICF as a reference.
- A qualitative study (49 focus groups with 230 participants) was performed to examine the "lived experience" of persons with spinal cord injury (SCI) in both the early post-acute and the long-term context using the ICF as a reference.
- An internet-based expert survey was performed to gather the opinion of an international pool of 243 experts from 6 different health professions regarding the most relevant and typical areas to be considered in individuals with SCI.
- To identify the most common problems of persons with SCI in the early post-acute and the long-term context, a multicentre cross-sectional study collected data of 489 individuals with SCI in the early post-acute context and 559 in the long-term context in 16 study centres worldwide.
An international ICF consensus conference took place at the Swiss Paraplegic Research in November 2007. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with SCI. Thirty-three SCI experts from 6 health professions (physicians, physiotherapists, occupational therapists, nurses, psychologists and social workers) and from 30 countries decided which ICF categories are to be included in the ICF Core Sets for SCI following a multi-stage, well-established decision- making and consensus process which integrated the results from the 4 preparatory studies.
Unique aspects of functioning in persons with SCI exist for the early post-acute and the long-term context, respectively. Thus a Comprehensive and a Brief ICF Core Set were defined for both the early post-acute and the long-term context. 162 ICF categories were selected for the Comprehensive ICF Core for SCI in the early post-acute context. Out of the 162 Comprehensive ICF Core Set categories, 25 ICF categories were selected for the Brief ICF Core. The Comprehensive ICF Core Set for SCI in the long-term context consists of 168 categories and the Brief ICF Core Set 33 categories. Further validation of these ICF Core Sets are currently being conducted.