FIBROMYALGIA FATIGUE – DEVELOPMENT OF A CONCEPTUAL MODEL BASED ON QUALITATIVE PATIENT INTERVIEWS

Author(s)

Mease P1, Humphrey L2, Arbuckle R2, Williams DA3, Danneskiold-Samsoe B4, Gilbert C51Seattle Rheumatology Associates, Seattle, WA, USA, 2Mapi Values Ltd, Bollington, United Kingdom, 3University of Michigan, Ann Arbor, MI, USA, 4Frederiksberg Hospital, Frederiksberg, Denmark, 5Pfizer Ltd, Sandwich, United Kingdom

OBJECTIVES: Although fatigue is increasingly recognized as an important symptom in fibromyalgia (FM), qualitative evidence regarding how patients describe this and the impact it has on their daily lives is limited. We conducted qualitative research to better understand what individuals with FM mean by ‘fatigue’, assessed the impact it had on their lives, and developed a conceptual model to represent these findings. METHODS: Open-ended, qualitative interviews were conducted with 40 FM patients (US (n=20), Germany (n=10) and France (n=10)) using open-ended questions and creative tasks to elicit unbiased information about FM and FM fatigue. Transcripts were analysed using qualitative methods based on grounded theory. RESULTS: Participants were 70% female; mean age 48.7 years (range 25-79) with a range of education levels. Thirty-one (77.5%) spontaneously described experiencing fatigue/tiredness/lack of energy due to FM. The conceptual model developed depicts key elements of FM fatigue from a patient perspective, which was discussed as being more severe than normal tiredness, constant/persistent and unpredictable. In the model it is defined as: an overwhelming feeling of tiredness (n=17, 42.5%), not relieved by resting/sleeping (n=14, 35%), not proportional to effort exerted (n=25, 62.5%), associated with a heavy feeling in their body (n=16, 40%) or a weak feeling in their muscles (n=9, 22.5%), makes it difficult to motivate themselves to do things (n=23, 57.5%), affects things they want to do (n=27, 67.5%), or makes tasks take longer to do (n=15, 37.5%), and makes it difficult to concentrate (n=21, 52.5%), think clearly (n=12, 30%) or remember things (n=9, 22.5%). CONCLUSIONS: The majority of individuals with FM experience fatigue and describe how it is more severe than normal tiredness. The qualitative data supported development of a conceptual model of key elements of FM fatigue from the patient perspective which will be used to construct an FM specific fatigue measure.

Conference/Value in Health Info

2009-10, ISPOR Europe 2009, Paris, France

Value in Health, Vol. 12, No. 7 (October 2009)

Code

PR3

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Neurological Disorders, Respiratory-Related Disorders

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