N20 The impact of inflammatory bowel disease-related fatigue on health-related quality of life: a qualitative semi-structured interview study
S. Radford1, G.W. Moran1, W. Czuber-Dochan2
1NIHR Nottingham Biomedical Research Centre and The university of Nottingham- Nottingham Digestive Diseases Centre., Nottingham University Hopitals NHS Trust, Nottingham, UK, 2Kings College London, Florence Nightingale Faculty of Nursing- Midwifery & Palliative Care, London, UK
Background
Fatigue is a frequently reported symptom of inflammatory bowel disease (IBD), experienced by patients with active disease and in remission. Fatigue related to chronic conditions plays a significant negative role in Health-Related Quality of Life (HRQoL), but patients’ experience of this have not been researched in IBD. We aimed to explore experience of IBD fatigue and its impact on HRQoL in adults diagnosed with IBD.
Methods
Qualitative, semi-structured in-depth interviews were conducted with adults with IBD in remission, recruited from out-patient clinics in the UK. Eligibility and medical history were confirmed at recruitment. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the data using NVivo 12 software.
Results
Fourteen participants (eight female, average age 37.3 years old, range 21–64) were interviewed. All identified as ‘White British’, average length of living with IBD fatigue was 10.9 years (range 9 months–17 years). Twelve participants reported constant fatigue and two reported intermittent fatigue. There were three key themes reflecting patient experiences: (1) ‘The new normal’ established through attempts to adapt daily life and acceptance of IBD fatigue impact on daily life and HRQoL. HRQoL is negatively impacted by lack of feelings of fulfilment, not being able to continue on as before the onset of IBD fatigue and a negative perception of self in comparison to others without IBD fatigue; (2) ‘Energy as a resource’ describes participants attempts to better manage fatigue on a daily basis through planning and prioritising tasks, often prioritising employment or education over social or leisure activities; (3) ‘Keeping healthy’ encompasses participants beliefs that good nutrition, good general health and keeping active allow them to generate energy more easily allowing some situational control where they have little control over IBD symptoms, subsequently improving HRQoL. Participants reported a mix of physical activities that improved HRQoL; however, none reported a specific programme of exercise.
Conclusion
Adults with IBD fatigue try to establish a sense of ‘new’ normality, through maintaining the same or similar, level of activities related to employment or education. However, this is often at the expense of personal, social and leisure activities. The study also indicates that perceptions of conservation of energy through planning and prioritising tasks and high levels of social support were associated with better self-reported HRQoL. Further research is required to explore physical activity-based intervention in relation to IBD fatigue, with use of validated fatigue and HRQoL measures.