ICF Core Set for Chronic Widespread Pain
There are a large number of health conditions that present chronic generalized pain or chronic widespread pain. Although there is not a universally-accepted definition of chronic widespread pain, there is increasing agreement that it represents pain involving several regions of the body. This conceptualization has been applied both in the diagnosis of fibromyalgia as well as in epidemiological studies. All conditions associated with CWP carry a high level of burden. Problems in functioning, psychological distress, fatigue, poor sleep quality and difficulties in activities of daily living have consistently been reported in the literature as related to chronic widespread pain. However, no systematic framework that covers the spectrum of symptoms and limitations in functioning of persons with chronic widespread pain had previously been established.
To tackle this issue, the ICF Research Branch and the World Health Organisation (WHO) with the scientific support of Ludwig-Maximilian University (Germany), National Institute for Medical Rehabilitation (Hungary), AarReha Schinznach (Switzerland), Moss Rehabilitation Hospital (USA), University of Texas Health Science Center at San Antonio (USA), Bone and Joint Decade, and the European League against Rheumatism (EULAR), initiated a project to develop internationally-accepted and evidence-based ICF Core Sets for chronic widespread pain. 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 clinical trials published from 1991-2000 involving patients with chronic widespread pain.
- The international expert survey (via email) using the Delphi technique was conducted with 35 health professionals, experts on the treatment of persons with chronic widespread pain, to identify the set of domains that best describe the prototypical spectrum of problems in functioning and health in persons with chronic widespread pain from the of health professional perspective.
- The multicentre cross-sectional study using the ICF checklist with a convenient sample of 101 patients undergoing inpatient or outpatient rehabilitation was performed to identify the common problems experienced by persons with chronic widespread pain.
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 chronic widespread pain. Thirty experts (physiatrists, rheumatologists, psychiatrists, physiotherapists, psychologist, occupational therapist, social worker)) from 10 different countries decided which ICF categories are to be included in the ICF Core Sets for chronic widespread pain following a formal, decision-making and consensus process which integrated the results from the 3 preparatory studies.
67 ICF categories were selected for inclusion in the Comprehensive ICF Core for chronic widespread pain. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 67 Comprehensive ICF Core Set categories, 24 ICF categories were selected as categories for the Brief ICF Core for chronic widespread pain. The Brief ICF Core Set can be used in assessing patients participating in a clinical study on chronic widespread pain.
Validation studies have been conducted.
The project was funded by an unrestricted educational grant from the Zurzach Foundation (Switzerland).