Disability and Fibromyalgia

Critically linked to severity of FMS is the presence or absence of disability. Disability is one of the major outcomes of FMS a significantly affects patient's home, recreational, and working life. There is no easy way to assess disability in FMS patients even though it causes significant personal and societal costs of increasing magnitude. The World Health Organizations international Classification of Impairment Disabilities and Handicaps models appears relevant to FMS. 9. Impairment represents the loss or functional limitation of an organ or system of the body or the mind, which, at the time of evaluation, is nonprogressive and stable. It may involve psychologic, physiologic, or anatomic structural or functional change. In FMS patients, impairment relates to alteration in the pain system, fatigue, sleep disturbance, and the psychologic distress, as well as many accompanying features of the problem, (for example, secondary cardiovascular and muscle deconditioning). The American medical association guide to the Evaluation of Permanent Impairment, 8 used to evaluate musculoskeletal impairment, is inappropriate in the FMS setting, as it relies only on change in joint motion. Although there is some attention to pain, further refinements are needed.

It is unfortunate that impairment in FMS is often used interchangeably with the term disability. Impairment assessment often occurs in the context of assessment for medicolegal purposes or for determination of social security benefits. In this context, many of the instruments used in FMS assessment suffer from subjective self-report discrepancies. The clinician must be aware of the possibility that exaggeration, for example, may modify the result of the test being applied. There is no easy solution to this problem, but clinical experience may allow for a qualitative comment to be added if the assessment is being made for the purposes of providing a medical report.

Disability is a form of behavior. It represents a task-specific limitation of performance that represents restriction or lack of ability to perform an activity in the manner considered normal. Disabilities represent disturbances of the level of a person and thus is determined as much by the person's attitude, beliefs, or motivation as by any underlying impairment of the pain or associated systems in FMS. The link between impairment and disability is thus very tenuous. Disability remains a societal and legal determination that is often defined for the purpose of provision of social or economical benefits to the person determined as being disabled. There are physical, mental, and social components. The latter category encompasses the term handicap. This relates to the disadvantage to the individual resulting from an impairment or disability tat limits or prevents the fulfillment of a role that is normal, depending on age, sex, and social and cultural factors for that individual. Handicap, like disability, needs to be expressed in relation to the task or activity that is affected. Definitions of impairment and disability vary greatly according to legislation. This variance will occur between countries and within countries. Even in the same State or Province, there are different rules and definitions between, for example, a workers compensation, a superannuation, a life insurance, and a disability support pension scheme. A person with the same severity and type of FMS may be accepted with open arms into one scheme but be rejected by another.

There remains an outstanding unmet need to adopt valid and reliable criteria to deal with this situation in a compassionate and acceptable way, both for the person with FMS and for society. The Fibromyalgia Impact Assessment measures circumstances and conditions particularly relevant to FMS patients. It has been found useful as a disability outcome measurement instrument. 63. The questionnaire has 98 items, including measures of functional domains of pain, depression, sleep, and fatigue. AIMS provides disability information. Other work capacity instruments assess physical capacity in relation to work characteristics but as yet remain unvalidated in FMS patients in whom psychologic factors may be as important. A number of FMS work-related instruments are in development. The Keitel index. 69. provides information on self-care skills, mobility, and ambulation and takes 10 to 15 minutes.

WHAT TO MEASURE?

FMS is a Pandora's box. The more you look, the more you find. At an American Rheumatology Association Meeting in the early 1980s, a slide outlining the pathogenesis of fibromyalgia was put up in a tongue-in-check manner for consideration as a candidate for the ARA Slide Collection. The slide was blank! Today, that slide would be full of complicated pathways linking central neurophysiologic processes to various symptoms and signs of the FMS condition. What of this information do we need to record when assessing or following a patient with FMS?

The clinician seeks information that will assist diagnosis, prognosis, and treatment. The sort of information varies according to the demands, skills, and interests of the clinician. Table 4 outlines the options for an average clinician. If that clinician is part of a multidisciplinary program managing FMS in a structured and in-depth way, the database must necessarily be larger, as extra information is needed to provide a coordinated global approach to management. Such patients generally have more pain complaint, fatigue, emotional distress, and disability. These dimensions must be catered for in the evaluation and outcome assessments. Table 4 suggests additional instruments that might be useful in this setting. If the patient is sent for assessment for medicolegal reasons, a different database may be required. This assessment needs to take into account features such as diagnosis, classification, severity, causality, disability, and prognosis. These issues are difficult, and there is no right or wrong approach to them. A suggested plan is outlined in Table 4. In contrast, the general researcher may require a more extensive database. Depending on the question being asked, a variety of instruments may be chosen-more than discussed earlier (Table 4). Finally, what is the complete database for FMS? This set would include all of the instruments and observations discussed plus many more.

Patient's Pain Communication Tool