Fibromyalgia Patients Get Help With New Self-Report Measure of Fatigue

Fibromyalgia Patients Get Help With New Self-Report Measure of Fatigue

Researchers have created a new self-report measure of fatigue for fibromyalgia patients, the Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue Profile. The research paper, “The PROMIS Fatigue Profile: a self-report measure of fatigue for use in fibromyalgia,” was published in Quality of Life Research.

Fibromyalgia is a debilitating and chronic condition associated with muscular or musculoskeletal pain, fatigue and mobility issues, with symptoms varying from patient to patient. According to the American Fibromyalgia Syndrome Association Inc, 3 to 5 percent of the general population is affected by this condition. Although pain is often considered the hallmark symptom of FM, fatigue is one of the most common and incapacitating FM symptoms. It is described by patients as profound and overwhelming, characterized by a severe and constant exhaustion that it is not relieved by rest or sleep.

Because FM is characterized by multiple symptoms, it is difficult and time-consuming for patients to rigorously assess all symptom domains. It is therefore important to develop accurate and patient-friendly measurements of the health-related quality of life (HRQOL) domains relevant to individuals with fibromyalgia.

When the Patient Reported Outcomes Measurement Information System (PROMIS) was created, it was intended to be an efficient and accessible HRQOL measurement, containing a 95-item bank to evaluate fatigue in adults, such as frequency, duration, intensity, and its impact on physical, mental, and social activities. However, unlike the PROMIS tools to measure pain, fatigue measures have been criticized for including all fatigue items in a single measure, which is inconsistent with the model of fatigue in FM that indicates a multidimensional and complex fatigue experience for fibromyalgia patients.

Researchers developed a fatigue self-report measure by selecting a subset of existing PROMIS fatigue items that would be more relevant for FM patients. A total of 532 adults with fibromyalgia, all members of the National Fibromyalgia Association (NFA), completed the PROMIS fatigue item bank and, using several analytical methods and clinical input information, the team identified the best performing items for fatigue self-report in FM. This analysis resulted in a 16-item measure, consisting of four 4-item short forms evaluating fatigue experience and fatigue impact in three subdomains (social, cognitive, and motivation): the PROMIS Fatigue Profile.

This new self-report is more reliable and contains the same or more test information when compared to the standard four- and seven-item PROMIS fatigue short forms.

“The newly developed PROMIS FatigueFM Profile … shows early evidence of good psychometric characteristics, [and] provides the ability to use short forms that assess distinct aspects of fatigue experience and fatigue impact … Future work to evaluate the validity and reliability of this new measure in individuals with FM is needed,” the authors concluded.

One comment

  1. Rick Schnitzler says:

    So in other words you got nothing. I have had this illness since 1993 and have asked medical “professionals” to put aside all the other issues and just address the so called “fatigue.” Result, they flee like rodents when the light comes on. I have not been able to gainfully employ myself since getting ill and have filed for SSA. How many of you really think a “self report” of my fatigue means anything to them? I can assure you it means nothing! With the education you have, and the practical experience, you should know this means nothing. Can you write an article that shows an actual test with some kind of metric to “actually” shows the fatigue issues we have instead of some “subjective” (in reality that is how our complaints are viewed, and overlooked)? Here is something you may want to consider. before my illness I loved to lift weights. I worked out several hours everyday splitting body parts on different days. I would perform exercises until my muscles were “fatigued.” However, at no time did I ever feel such a lack of ENERGY that I felt I could not perform daily life tasks afterwards. Fatigue has never been the issue with fibromyalgia, it is much more basic, down to energy. Either how we process it, or utilize it. I am offended when people try to tell me I am tired! One last point, for all those who may read this, I would ask you to look at the NIH’s findings concerning Fibromyalgia/CFIDS. They call it SEID – Systemic Exertion Intolerance Disease. This is much more representative of “us” than the usual dribble printed!

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