Development of the ICF Core Sets for Ankylosing Spondylitis

In 1997 and 1999, recommendations for outcome assessment of ankylosing spondylitis (or the minimum domains to be measured in trials or for clinical record keeping) were proposed by the Assessment of SpondyloArthritis international Society (ASAS)/OMERACT group. These recommendations was not primarily developed to comprehensively describe functioning of individuals with ankylosing spondylitis but rather to measure all aspects of outcome. Moreover, the selection of the ASAS/OMERACT domains did not include the perspective of non-rheumatologists or patients and it ignores the relationships among domains. To tackle these issues, the ICF Research Branch, the World Health Organisation (WHO) and the ASAS initiated an ICF Core Set development project to identify all aspects of "what to measure" when addressing the impact of ankylosing spondylitis on global functioning taking into account the perspectives of all parties. It was envisioned as the starting point for the global assessment of patients as well as for studying functioning and health and the development of new instruments.

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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.

 

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ICF Core Set for Osteoporosis

Clinically, osteoporosis is recognized by the occurrence of fractures, considering hip fractures as the most serious outcome. The number of hip fractures is increasing throughout the world, and the projected number for 2050 is 6.3 million worldwide. Osteoporosis and associated fractures have therefore become a major public health concern, not only in Western Europe and North America but globally. Based on the health domains covered by available generic health-status measures and a qualitative review of the literature, a number of health domains of importance in patients with osteoporosis have been suggested in the 2003 World Health Organisation (WHO) Technical Report on the burden of musculoskeletal conditions. With the ICF it is now possible to define the typical spectrum of problems in functioning of patients with osteoporosis under consideration of environmental factors in a more systematic way using a globally agreed-upon language.

 

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ICF Core Set for Osteoarthritis

Osteoarthritis is among the 3 most disabling conditions having a remarkable public health impact in developed countries. It also has a high prevalence in the increasing population of elderly people. Research and clinical management of patients with osteoarthritis relies on the sound measurement of pain and functional limitations. The Outcome Measures in Rheumatology Clinical Trials group (OMERACT) and the 5th WHO/ILAR Task Force (World Health Organization/International League Against Rheumatism) recommended the use of condition-specific health-status measures to assess the domains pain, physical function, joint imaging, and patient global assessment in clinical research and practice. In contrast to the OMERACT perspective, which focuses on functioning and health as an outcome of the disease process to be evaluated in phase-III trials, functioning and health is not merely an outcome, but the starting point for assessing functioning and health of patients. With the ICF it is now possible to define the typical spectrum of problems in functioning of patients with osteoarthritis under consideration of environmental factors in a more systematic way using a globally agreed-upon language.

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ICF Core Set for Low Back Pain

Low back pain has reached epidemic proportions, being reported by about 80% of the population people at some time in their lives. Seventy-five percent of people with low back pain are between 30 and 59 years of age, i.e. in their most productive years. While not a disease, low back pain is a major cause of disability. The symptoms of low back pain and the associated disability bear only a poor relationship to objective data. Therefore, much effort has been made to try to identify meaningful outcome measures. Condition-specific instruments have been used in clinical studies to address functioning, disability and health of persons with low back pain. However, there is little standardization of the use of these instruments, and comparisons among studies are difficult or impossible. Thus, it would be valuable for teaching, clinical practice and research to define what should be measured to comprehensively represent the experience of patients based on an extensive framework that can serve as a universal language understood by health professionals, researchers, policymakers, patients and patient organizations alike.

 

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ICF Core Set for Rheumatoid Arthritis

Rheumatoid arthritis (RA) is a chronic disabling disease. People with RA may have a shorter life expectancy and disability in RA patients may be serious, affecting people in their most productive years. Thus disability results in a major economic loss. Current recommendations regarding assessment of the disease and disease consequences, for example in trials of anti-rheumatic drugs include the recommendation to measure function mainly referring to physical function. Accordingly, measures of function are increasingly used in RA studies. However, condition-specific measures typically cover only selected aspects of the person's experience with RA. Also, the measures vary quite considerably regarding the concepts included. It would therefore be valuable for teaching purposes, clinical practice and research to define what should be measured to comprehensively represent the experience of persons with RA.

 

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