Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Fatigue in Fibromyalgia Patients: A Qualitative Study Exploring a Conceptual Framework.
Mease4, Philip J., D'Ambrosio3, Lisa, Hareendran6, Asha, Mohyde2, Maureen, Pokrzywinski6, Robin, Seymour5, Kristin, Blum1, Steven
In addition to pain, fatigue is a common and important symptom of fibromyalgia (FM) and has been included in the OMERACT (Outcome Measures in Rheumatology Clinical Trials) core domain set1 and the 2010 ACR Preliminary Diagnostic Criteria for FM.2 The FDA Guidance on Patient-Reported Outcome (PRO) Measures recommends input from patients in development or modification of PRO instruments. This study was conducted to further explore FM patients' experience of fatigue and to provide insight into how it can be measured in a way that captures concepts that are most relevant to patients with FM.
Two focus group discussions among clinically diagnosed FM patients were conducted (n=18). All patients were female and were recruited from a single clinical practice site. The focus groups were conducted using a semi-structured interview guide. Initial discussions began with open-ended questions about challenges of living with FM, effects of FM on daily life, interactions with others and experience with fatigue. Patients were then further probed about their experience with fatigue due to FM. Audio recordings were transcribed and analyzed using a researcher developed coding book and atlas.ti software.
The data support existing frameworks for FM but offers additional insights in the experience of fatigue among patients with FM. The data suggest that fatigue in FM varies within a week and even within a single day. FM patients perceive the severity of their fatigue in terms of its implications for daily function, impacts on sleep, cognition, motivation and emotions. When discussing the impact of fatigue on functioning, patients described activities they are no longer able to participate in, such as personal care, housework, work productivity, cooking, making or keeping plans, and losing spontaneity. Although sleep disturbances were reported by patients, many perceived being fatigued and tired as separate concepts. Fatigue was not necessarily improved by sleep. Fatigue and cognitive dysfunction were closely intertwined, such as being in a 'fibro fog', not being able to concentrate, forgetting things, difficulty making decisions, and feeling like there is a mental curtain or veil. Lack of motivation as a result of fatigue was exemplified by having to push to start or complete activities, lacking initiative, and feeling depleted. The emotional impact of fatigue stemmed from feeling frustrated with not being able to do things they wanted and not being able to remember things. Patients also expressed feeling embarrassment or guilt for not being able to do things, especially with family and friends. Patients perceived physical experiences of fatigue as if being weighted down, such as wearing heavy clothing made of cement.
This qualitative work has provided additional insights for a framework for evaluating fatigue in FM. It is important to evaluate more than the frequency and severity of being tired. The variability of patients' experience of fatigue in FM suggests the need for more frequent assessment as well as a broader set of concepts to be evaluated when measuring fatigue in FM.
To cite this abstract, please use the following information:
Mease, Philip J., D'Ambrosio, Lisa, Hareendran, Asha, Mohyde, Maureen, Pokrzywinski, Robin, Seymour, Kristin, et al; Fatigue in Fibromyalgia Patients: A Qualitative Study Exploring a Conceptual Framework. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :99