Title:
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The development of scales to measure fatigue in people with rheumatoid arthritis
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Background: The problem of fatigue in Rheumatoid Arthritis (RA) was brought to the
attention of healthcare professionals by patients at an international meeting in 2002. Since
then research has established that fatigue is an important problem for patients. In order
for effective interventions to be developed reliable and robust tools are required to
measure RA fatigue. This research first set out to evaluate tools to measure RA fatigue in
UK patients, but found there were none that captured the fatigue experienced by RA
patients. It was therefore necessary that new scales should be developed to address this
issue.
Identifying the patient perspective: First, interview transcripts of patients describing
their fatigue experience (n=15) were explored to identify the language that patients used
to express their fatigue and its' consequences. These data were utilised to identify 12
concepts of fatigue: Cognition, Coping, Duration, Emotion, Energy, Frequency, Impact,
Planning, Quality of Life, Relationships, Sleep, Social life, (Study 1, Chapter 2).
Focus groups: To ensure data generalisability and robustness three focus groups were
conducted to further explore the issues identified in Study 1. In addition, the focus group
members developed the wording for visual analogue scales and numerical rating scales to
measure fatigue severity, effect of fatigue and ability to cope with fatigue (Chapter 3).
Scale design: Using these data and sources from the literature a preliminary multi-item
questionnaire and a set of short scales to measure fatigue were developed (Chapter 4).
To ensure that the scales were understood by patients in the way intended a "think aloud"
study was conducted, which led to changes in wording and layout of the scales (Chapter
5).
Scale validation: Quantitative research was employed to conduct validation of the scales.
The short scales were found to be valid and able to measure the concepts of severity,
effect and ability to cope with fatigue (Chapter 6). The multi-item questionnaire contained
four separate dimensions of fatigue, namely Cognition, Emotion, Living and Physical
(Chapter 7). Preliminary exploration of the data found differences in fatigue experience
between genders and within genders (Chapter 8).
Conclusion: These scales will allow the individual experience of RA fatigue to be
measured and facilitate development of individually tailored fatigue interventions.
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