Background Chronic fatigue is a symptom of rheumatoid arthritis (RA) that can severely impact patients' quality of life, including ability to work. However, clinical guidelines in the UK contain few references to the effective management of chronic fatigue. To quantify the impact of chronic fatigue and understand how it is managed, the National Rheumatoid Arthritis Society (NRAS) surveyed over 2,000 people with RA about their experiences.
Objectives The National Rheumatoid Arthritis Society (NRAS) wanted to quantify the impact of chronic fatigue on RA patients and understand how it is managed.
Methods NRAS developed open and closed survey questions to explore different impacts of chronic fatigue. To facilitate comparison, validated questionnaires were used: Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire; Bristol Rheumatoid Arthritis Fatigue - Numerical Rating Scales; Work Productivity and Activity Impairment Questionnaire; and Work Activity Limitations Scale. 5,212 invitations were sent out electronically to people with RA and distributed via e-newsletters and social media. 2,029 respondents completed the survey, a further 716 clicked the link but failed to complete it, and 36 did not meet the qualifying criteria of being over 18, resident in the UK and diagnosed with RA.
Results Chronic fatigue is widespread: 89% of respondents experienced it and 98% of these said it affected them during the previous 7 days. Chronic fatigue significantly affects work: 71% of working age respondents that were unemployed said it contributed to them not being able to work and 24% said they changed jobs because of it. Employers need to help more: 23% of employed respondents took more than 10 days off in the last 12 months due to chronic fatigue, but 49% said their line manager had not discussed or offered changes in the workplace. Chronic fatigue has a high impact on mental health: 90% of respondents said it caused them to feel down or depressed during the last 7 days, including 38% who said they felt very down or depressed. Chronic fatigue has a high impact on relationships: 70% of respondents said it prevented them from taking part in family activities and 54% said it negatively affected their sex life. Chronic fatigue is not well managed by healthcare professionals: 66% of respondents had never or rarely been asked about it, and 79% said it had never been measured. RA patients need to access treatments for chronic fatigue: 16% of respondents said they did nothing to manage it and only 2% had attended a chronic fatigue self management programme.
Conclusions The results suggest chronic fatigue has wide-ranging impacts, but is poorly managed by healthcare professionals and RA patients. Clinical guidelines should be revised to prioritise its effective management, including use of validated fatigue measures. Patient education and self-management strategies should also be prioritised for RA patients. Finally, more should be done to raise awareness of chronic fatigue amongst employers and how to manage it in the workplace.
Disclosure of Interest None declared
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