PROMIS was initially designed by the National Institutes of Health (NIH) to measure health-related quality of life in NIH-funded studies across a range of chronic conditions. Whereas PROMIS provides a single fatigue score, the PROMIS FatigueFM Profile captures the “complex, multi-faceted experience” of fibromyalgia-related fatigue, Dr Kratz pointed out.
“Specifically, it contains separate subscales that measure fatigue intensity, how much the fatigue impacts social or mental/cognitive activities, and how much fatigue interferes with one’s motivation,” Dr Kratz said.
Given the easy-to-interpret scores that can be readily compared with that of other fibromyalgia patients and the general population, Dr. Kratz anticipates that the PROMIS FatigueFM Profile will eventually become the standard for evaluating fibromyalgia-related fatigue in clinic and research settings.
The same University of Michigan team also used PROMIS to devise the Multidimensional Inventory of Subjective Cognitive Impairment (MISCI), a 10-item measure of cognitive dysfunction specifically intended for use in patients with fibromyalgia and other widespread pain conditions.2,4
The MISCI tool assesses PROs concerning mental clarity, memory, attention/concentration, executive functioning, and language. In 2 studies of adults with fibromyalgia, results from MISCI correlated strongly with results from the Multiple Ability Self-Report Questionnaire, a commonly used cognition assessment that takes longer to complete.2
According to Dr Kratz, current efforts are focused on additional PROMIS-based instruments of high relevance to fibromyalgia clinicians and researchers.
How Can PROs Help?
Other standardized PRO instruments are available to assess several aspects of pain, overall symptom burden, sleep quality, mental health (eg, depression, anxiety, stress, personality, and positive and negative affect), physical function, mental function, disability, and social satisfaction and impairment.2
There are also PRO instruments for assessing beliefs and attitudes about pain, including catastrophizing, which Dr Williams described as “the tendency to experience pain in the most awful manner possible.”
Patients with higher levels of catastrophizing may have poorer outcomes with traditional pain treatments, Dr Williams said, adding that PRO assessments of coping and belief mechanisms can help clinicians identify strategies for overcoming pain intolerance.
Noting that fibromyalgia likely has several pathological mechanisms, Dr Williams suggested that PRO data may help identify different disease phenotypes and potentially uncover valuable biomarkers. “The eventual hope is to have better ways to diagnosis fibromyalgia and to match treatment to the underlying mechanism,” Dr Williams said.
Even if researchers do discover biomarkers to diagnose, phenotype, and assess fibromyalgia, PROs will remain essential, Dr Kratz said, noting that tests such as imaging and blood work have never been good indicators of patient suffering or quality of life.