ArticleBMJ open2022
Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue: difficult, demanding and draining.
Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 19 citations in OpenAlex.
- The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) scale in patients with axial spondyloarthritis: psychometric properties and clinically meaningful thresholds for interpretation.Journal of patient-reported outcomes · 2024Trial
- A qualitative study of enablers and barriers to healthy eating in adults with Charcot Marie Tooth disease using the Theoretical Domains Framework and COM-B model.Journal of health psychology · 2026Article
- Patients' experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)-a qualitative evaluation.BMC rheumatology · 2024Article
- Effectiveness of Shiatsu on Fatigue in Patients with Axial Spondyloarthritis: Protocol for a Randomized Cross-Over Pilot Study.Rheumatology and therapy · 2023Article
- Qualitative concept elicitation and cognitive debriefing interviews of symptoms, impacts and selected customized PROMISJournal of patient-reported outcomes · 2023Article
- Prevalence and factors associated with fatigue in patients with axial spondyloarthritis: a systematic review and meta-analysis.Rheumatology advances in practice · 2023Review
- The behavioural epidemiology of sedentary behaviour in inflammatory arthritis: where are we, and where do we need to go?Rheumatology advances in practice · 2023Review
- Development of the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd)-a new patient-reported outcome measure.Rheumatology advances in practice · 2022Article
Corrections and comments
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Authors and funding
8 authors at 6 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo explore patients' lived experiences of axial spondyloarthritis (axSpA) and fatigue.
designInterpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes.
settingRheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England.
participantsA purposive sample of seventeen axSpA patients were recruited. The age range was 22-72 years (median age 46), nine were male and eight, female.
resultsA central concept of achieving balance was identified as the active process of integrating axSpA symptoms and fatigue into daily life, working with and not against their condition to lead a fulfilled life. This was conveyed through three superordinate themes: struggling to find energy, engaging in everyday life and persevering through difficulties. Struggling to find energy was the challenge of retaining enough stamina to do things in daily life. Engaging in everyday life highlighted dedication to being active and organised, learning through experience and acceptance of a changed way of being. Persevering through difficulties identified the physical and emotional effort required to keep moving forward and the importance of feeling supported.
conclusionAchieving balance through finding energy, engaging and persevering everyday was fundamental to having the best possible life. The experience of energy emerged as a distinct but related component of fatigue. However, while energy could be maintained or replenished, fatigue was more difficult to overcome and required greater effort. Energy may be a useful indicator of an individual's current state and ability to sustain activities that supports their well-being, such as exercise. Awareness of the elements of achieving balance in axSpA may enable patients and clinicians to work together to tailor treatments to individual patient need.
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Registered trials
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