ICF Core Set for Stroke
Stroke is a major public health concern, being among the most common causes of death and disability. 40–77% of patients are alive 1 year after a stroke, and many survivors face long-term disability. Stroke also imposes a substantial economic burden with direct and indirect costs estimated at $51.2 billion for 2003 in the USA. Several national and international guidelines on stroke management have been published containing recommendations on interventions and assessment strategies targeted towards the diverse areas of post-stroke disability to be considered beyond the acute phase. Although large degree of consensus exists across the different national and international guidelines, general agreement on the scope of concepts to be taken into account and on the instruments to be used in stroke disability assessment still seems to be lacking.
To tackle this issue, the ICF Research Branch and the World Health Organisation (WHO) with the scientific support of Ludwig-Maximilian University (Germany), University Hospital and Maastricht University (The Netherlands), Liverpool Health Service, Division of Medicine (Australia), Asklepios- Klinik Schaufling (Germany), University of Malaya (Malaysia) and the Loewenstein Rehabilitation Center (Israel), initiated a project to develop internationally-accepted and evidence-based ICF Core Sets for stroke. This project was part of a larger project examining 12 chronic conditions with a high burden of disease.
The preparatory phase included a systematic literature review, a Delphi exercise and an empirical data collection using the ICF checklist:
- The systematic literature review was performed to identify and compare the concepts contained in outcome measures of randomized, controlled stroke trials published from 1992-2001 using the ICF as a reference tool.
- The international expert survey (via email) using the Delphi technique was conducted with 43 health professionals, experts on the treatment of stroke patients, to identify the set of domains that best describe the prototypical spectrum of problems in functioning and health in persons after a stroke from the of health professional perspective.
- The multicentre cross-sectional study using the ICF checklist with a convenient sample of 93 patients undergoing inpatient or outpatient rehabilitation was performed to identify the common problems experienced by persons after a stroke.
An international ICF consensus conference took place from 31 January - 3 February 2003 at a quiet monastery situated in a pleasant landscape far from any city and distractions. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with stroke. Thirty-six experts (physicians in various sub-specialities, physiotherapists, psychologists, social worker, sociologist) from 12 different countries decided which ICF categories are to be included in the ICF Core Sets for stroke following a formal, decision-making and consensus process which integrated the results from the 3 preparatory studies.
130 ICF categories were selected for inclusion in the Comprehensive ICF Core for stroke. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 130 Comprehensive ICF Core Set categories, 18 categories were selected for the Brief ICF Core for stroke (with 10 categories falling under the 50% cut-off). The Brief ICF Core Set can be used in assessing patients participating in a clinical study on stroke. Validation studies have been conducted.
The project was funded by an unrestricted educational grant from the Schön Clinics (Germany).