Wj Czuber-Dochan

Review article: description and management of fatigue in inflammatory bowel disease

Fatigue is a common and leading concern for patients with inflammatory bowel disease (IBD). It is managed inadequately in IBD, and there is little evidence to support interventions.

Assessing fatigue in inflammatory bowel disease: comparison of three fatigue scales.

Fatigue is commonly reported by patients with inflammatory bowel disease (IBD), both in quiescent and active disease. Few fatigue scales have been tested in IBD.

The contribution of clinical and psychosocial factors to fatigue in 182 patients with inflammatory bowel disease: a cross‐sectional study

Fatigue is a frequently reported and predominant symptom experienced by patients with inflammatory bowel disease (IBD) and its impact has been associated with poorer quality of life (QoL). The complex interplay between disease‐related variables and potentially modifiable psychosocial factors in IBD‐fatigue has yet to be unravelled.

PTH-088 Assessing fatigue in inflammatory bowel disease comparison and validation of three fatigue scales: ibd-f, mfi and maf scales

Introduction Patients with inflammatory bowel disease (IBD) report fatigue in both quiescent (41%) and active disease (86%);1however, due to its subjective nature it is difficult to assess. Many different fatigue scales exist, although most have not been tested with IBD populations. Only one scale has been developed specifically for people with IBD.2We aimed to assess validity and reliability of three fatigue assessment scales in an IBD adult population and to determine factors correlated with fatigue. Method A cross-sectional study. Participants (n = 605) were randomly selected and completed questionnaires assessing fatigue, anxiety, depression, quality of life and IBD activity. A sub-group of responders (n = 70) were sent the same mailing 6 weeks later for test-retest. The fatigue scales used were: the Inflammatory Bowel Disease Fatigue (IBD-F), the Multidimensional Fatigue Inventory (MFI) and the Multidimensional Assessment Fatigue (MAF). Internal consistency was measured by Cronbach’s alpha and test-retest reliability by the intra-class correlation coefficient (ICC). Results 465 (77%) questionnaires were completed for the test and 69% for retest. All three scales are highly correlated (p < 0.001). Test-retest suggests good agreement for all scales’ total scores with ICC values of 0.74 and 0.83 (IBD-F Section 1 and 2), 0.74 (MAF) and 0.65–0.84 (MFI). Age, gender, bowel condition, anxiety, depression and IBDQ scores were significantly associated with level of fatigue (p < 0.001) for all three fatigue scales. Older patients had lower fatigue scores, females had higher scores than males, colitis patients had significantly lower scores than Crohn’s patients, patients with a higher level of anxiety and depression had higher fatigue scores and better IDBQ was associated with lower fatigue scores. Conclusion All three tested fatigue scales were found to be valid and reliable measures of IBD fatigue. Factors such as age, gender, bowel condition, quality of life, anxiety and depression are significantly associated with fatigue and should all be taken into account in the process of care delivery to people with IBD and fatigue. Disclosure of interest W. Czuber-Dochan Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK, Ferring, C. Norton Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Ferring, Shire, P. Bassett: None Declared, S. Berliner Conflict with: Trustee for Crohn’s and Colitis UK, F. Bredin Grant/Research Support from: Service development awards from Shire and ferring, M. Darvell Employee of: Crohn’s and Colitis UK, A. Forbes Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk UK, Warner-Chilcott, NPS, M. Gay Consultant for: Crohn’s and Colitis UK, Conflict with: Trustee for Crohn’s and Colitis UK, E. Ream: None Declared, H. Terry Employee of: Crohn’s and Colitis UK References Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. Alimentary Pharmacology & Therapeutics. 2013;37(5):505–516 Czuber-Dochan W, Norton C, Bassett P, Berliner S, Bredin F, Darvell M, Forbes A, Gay M, Nathan I, Ream E, Terry H. Development and psychometric testing of inflammatory bowel disease fatigue (IBD-F) patient self-assessment scale. Journal of Crohn’s & Colitis. 2014;8:1398–1406

PTU-064 Inflammatory bowel disease and fatigue: the effect of physical activity and/or omega 3 supplementation

Introduction Fatigue is frequently reported by patients with Inflammatory Bowel Disease (IBD), despite disease remission. However, no previous intervention trial has studied this symptom. We tested the effects on fatigue in IBD patients from (i) individual advice to increase physical activity (PA) and/or (ii) supplementation with omega-3 fatty acids. Method Design:a randomised controlled 2 × 2 factorial study compared change-from-baseline scores in intervention and control groups. Primary outcome: change in FACIT-F (Functional Assessment of Chronic Illness Therapy – Fatigue) score; main secondary outcomes: change in fatigue survey scores including IBD-fatigue (IBD-F); PA by monitors (Actigraph, Pensacola, US); adverse effects. Eligibility: IBD remission; ≤2 portions oily fish/week; ≤ 60 min moderate-vigorous PA/week; no comorbidities causing fatigue; no depression. Interventions: exercise advice (15 min consultation) and fish oil supplement (2.97 g per day omega-3, “Take Omega 3”©, Edinburgh, UK); Controls: dietary consultation and placebo supplement. All patients received follow-up support (email, telephone). Results Over 640 IBD outpatients were screened: 74 of those eligible consented to inclusion and randomisation, 60 commenced the intervention, and 52 completed the study according to protocol. At baseline the four groups did not differ significantly (gender, age, disease location or past IBD activity, level of PA, or FACIT-F score). The only effect on fatigue from the primary outcome – significant deterioration in FACIT-F score (95% CI:-8.6-(-0.7); p = 0.02) – was with omega-3 supplement. Fatigue was however significantly reduced in the exercise groups, measured by IBD-F score (95% CI:-3.8-(-0.2); p = 0.03). There were no significant interactions between effects of exercise and fish oil on fatigue, or consistent trends in fatigue or PA levels across the various measures between the four groups. Only 1 treatment-related adverse event was reported (in exercise group), suggesting that neither exercise nor fish oil were associated with likelihood of occurrence of an adverse effect, including gastrointestinal symptoms. Conclusion The apparent worsening of fatigue with fish oil is unexplained. Exercise and fish oil, singly or in combination, were shown to be safe and generally well-tolerated in IBD patients. There was no evidence of adverse exercise-related effects on gut-related symptoms, and some evidence of improvement in fatigue. Hence, regular moderate-vigorous exercise may provide self-management options in IBD-related fatigue. Disclosure of interest A. McNelly Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, I. Nathan Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK, M. Monte: None Declared, G. Grimble: None Declared, C. Norton Grant/ Research Support from: National Lottery in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Ferring; Shire, F. Bredin: None Declared, W. Czuber-Dochan Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK; Ferring, S. Berliner Consultant for: Crohn’s and Colitis UK, M. Gay Consultant for: Crohn’s and Colitis UK, M. Darvell Employee of: Crohn’s and Colitis UK, H. Terry Employee of: Crohn’s and Colitis UK, A. Forbes Grant/ Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK; Warner-Chilcott; NPS.

PTH-111 Clinical and psychosocial predictors of abdominal pain frequency in patients with inflammatory bowel disease

Introduction Pain is a commonly experienced and burdensome symptom in patients with Inflammatory Bowel Disease (IBD). A substantial number of patients continue to experience pain while the disease is in remission. Research exploring factors in IBD-pain is sparse. This study aimed to explore sociodemographic, clinical and psychosocial factors associated with pain frequency in patients with IBD. Method Patients recruited from outpatient IBD services completed the United Kingdom Inflammatory Bowel Disease Questionnaire (UK IBDQ) and a number of sociodemographic, clinical and psychosocial measures. In the secondary analysis of these data, item 13 from the UK IBDQ measuring pain frequency, “On how many days over the last two weeks have you felt pain in your abdomen?”, was utilised as the primary outcome. Sociodemographic, disease-related and laboratory data were retrieved from patients’ hospital electronic medical records. Patients completed a number of self-report measures including: IBD-Fatigue Scale (IBD-F) and Multidimensional Fatigue Inventory (MFI), Hospital Anxiety and Depression Scale (HADS), IBD-Distress Scale (IBD-DS), Cohen Perceived Stress Scale (PSS), Brief Illness Perceptions Questionnaire (BIPQ) and Cognitive and Behavioural Responses to Symptoms Questionnaire (CBSQ). Univariate and multivariate analyses were conducted to test the relationship between pain frequency and sociodemographic, clinical and psychosocial variables. Results 182 patients with IBD took part in the study (57% female, 64% Crohn’s Disease, mean age 37.0 years). In univariate analyses, greater pain frequency was significantly associated with disease activity and fatigue. Female patients, those with active disease and taking steroids reported significantly more pain frequency. All emotional, cognitive and behavioural factors in psychosocial measures had significant positive correlations with pain frequency. In multivariate analyses, disease activity (p=0.01) and fatigue measured by the MFI (p=0.04), were significant predictors of pain frequency and explained 26% of the variance. Emotional, cognitive and behavioural factors were not found to predict pain frequency. Conclusion Fatigue and disease activity were independent predictors of pain frequency in patients with IBD. Utilising a single pain item from the IBDQ, none of the psychosocial factors were found to predict pain frequency. Further research, using more comprehensive pain measures, capturing pain severity and frequency is required to explore the relationship between pain and psychosocial factors in IBD. This knowledge may help in the development of pain management interventions. Disclosure of Interest None Declared

PWE-031a Exploring Fatigue in Inflammatory Bowel Disease – A Descriptive Phenomenological Study

Introduction Fatigue is frequently reported by people with active (86%) and quiescent (41%) inflammatory bowel disease (IBD).1 It is considered a complex and multifaceted symptom; it affects many aspects of individuals’ lives. To date, limited research has investigated IBD-fatigue;2 little is known about specific areas of life affected by it or how people with IBD manage it. Methods Descriptive phenomenology with unstructured, in-depth interviews.3 Twenty participants with IBD and reporting fatigue were purposively selected and interviewed face-to-face. Interviews were audio-recorded, transcribed verbatim and analysed using Moustakas’ method. Data were analysed at individual and composite (group) level, and provided a description (texture) and an explanation (structure) of the studied phenomenon. Results A wide range of terminology, including metaphors and similes, were used to describe fatigue reflecting its complex nature. Fatigue was presented as invisible, unpredictable, with constantly fluctuating daily patterns and severity. This made reporting fatigue difficult and at times lead to participants being challenged about its authenticity. The array of physical, psychological, cognitive and situational factors were perceived to contribute to fatigue, and different methods (e.g. sleep and rest, pacing, energy preservation, exercise, stress reduction, asking for help) were attempted by participants to manage fatigue. Most methods were not used systematically, possibly resulting in their apparently limited effectiveness. Impact of fatigue was perceived as negative, with participants constantly comparing their life and themselves as they were before fatigue and how much they have lost. They felt that fatigue is in control of their life and each day they had to fight another battle to defeat fatigue. Participants felt imprisoned in their fatigued unreliable body leaving them frustrated, isolated and lacking self-confidence. They reported loss of self and self-identity, resisting to accept the ‘new fatigued me’. Conclusion Fatigue is a major and debilitating symptom for individuals diagnosed with IBD, reducing their quality of life. The complex, invisible and fluctuating nature of fatigue makes difficult for patients to describe it to others. Patients need to be informed that fatigue is part of IBD and they should be encouragement to report and to seek help from health professionals. References 1 Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. APT 2013;37:505–16. 2 Czuber-Dochan W, Dibley L, Terry H, Ream E, Norton C. The experience of fatigue in people with inflammatory bowel disease: an exploratory study. JAN 2013;69:1987–99. 3 Van Manen M. Researching lived experience. 1997. The Althouse Press, London. Disclosure of Interest None Declared

PTH-089 Experience of living with fatigue as reported by people diagnosed with inflammatory bowel disease – a phenomenological study

Introduction Fatigue is one of the main symptoms of inflammatory bowel disease (IBD), however, little is known about specific areas of life affected by fatigue, its pattern over time or how people with IBD manage it.1This study aimed to address this shortfall in evidence. Method Descriptive phenomenology with face-to-face in-depth interviews. Twenty participants diagnosed with IBD and reporting fatigue were purposively selected. Interviews were audio-recorded, transcribed verbatim and analysed using Moustakas’ method,2which involves seven steps and analyses data at two levels: i) textural level – which generates a description of the phenomenon, ii) structural level – which describes underpinning factors and their relationships with fatigue. Results Participants found fatigue difficult to describe and used different terms, metaphors and similes to describe their experience. The terms fatigue, tiredness and exhaustion were used interchangeably. Fatigue was described as ‘heaviness of the body and fuzziness of the brain’ with a constantly fluctuating pattern and severity. The invisible and fluctuating nature of fatigue makes it difficult for patients to describe to others. Fatigue was perceived to impact on all aspects of daily functioning. Participants spoke of being trapped in an unreliable body, which made them feel angry, frustrated, isolated and depressed, and lead to loss of self-confidence and identity. Physical, psychological, cognitive and situational factors were perceived to contribute to fatigue. Different methods to manage fatigue were attempted by participants (e.g., sleep and rest, pacing, energy preservation, exercise, stress reduction, help seeking), but few were used systematically, possibly resulting in their apparent limited effectiveness. Conclusion Fatigue is a complex symptom (both multi-causal and multidimensional) and reduces quality of patients’ lives. Patients need to be informed that fatigue is part of IBD, and they need advice on how to manage it, encouragement to report it and to seek help when needed. An algorithm for assessment and management of fatigue could provide a more structured approach to the care of people reporting this troublesome symptom. Disclosure of interest W. Czuber-Dochan Grant/Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK, Ferring, J. Armes: None Declared, E. Ream: None Declared, C. Norton Grant/Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Ferring, Shire. References Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. Aliment Pharmacol Ther. 2013;37(5):505–516 Moustakas C. Phenomenological research methods. London: Sage, 1994

PWE-120 What Do Healthcare Professionals Know About Fatigue In Patients With Ibd And How Do They Manage It?

Introduction Fatigue is one of the top complaints in inflammatory bowel disease (IBD) with 40% of patients in remission and 86% in active condition reporting fatigue.1 However patients report that their complaints of fatigue are often not addressed in clinical consultations.2 This study aimed to gain an understanding of healthcare practitioners’ (HCPs) perception of IBD fatigue as experienced by people with IBD. Methods Descriptive phenomenology with purposive sampling was used to identify a range of professionals (gastroenterologists, IBD nurses, general practitioners, dietitians, psychologists and pharmacists). In-depth semi-structured interviews were conducted with 20 HCPs who work with people with IBD (June–Dec 2012). Colazzi’s framework was used to analyse the data.3 Results Three main themes and several sub-themes were identified. The main themes were: the phenomenon of fatigue as perceived by HCPs; the impact of fatigue on patients’ lives; and the methods used by HCPs to deal with fatigue. Fatigue was identified as an important, but difficult and often frustrating, symptom to understand. The study participants perceived fatigue as ‘a complicated and complex thing’. HCPs reported that fatigue impacts on the emotional, private and public aspects of patients’ functioning, however there were very few methods suggested on how to assess and manage the fatigue in a systematic way. Many expressed a desire for better education about fatigue and better multi-disciplinary effort to manage fatigue. Conclusion Despite fatigue being one of the symptoms most frequently reported by IBD patients, it remains poorly understood by HCPs, who find fatigue challenging and frustrating. There is a need for a systematic and structured assessment and management of this distressing symptom and HCPs should communicate with each other about care for each individual patient. There is a need for an assessment framework and for intervention strategies to be tested. It is essential for multidisciplinary team members to be involved in planning and managing coordinated care of patients reporting fatigue in IBD. References Czuber-Dochan W, Ream E, Norton C, Review article: description and management of fatigue in inflammatory bowel disease. Alim Pharma and Therap 2013;37(5):505–16 Czuber-Dochan W, et al. The experience of fatigue in people with inflammatory bowel disease: an exploratory study. JAN 2013;69(9):1987–99 Colazzi P, Psychological research as a phenomenology views it. In Valle R, King M Eds. Existential Phenomenological Alternatives for Psychology. 1978;New York: New York University Press Disclosure of Interest W. Czuber-Dochan Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, C. Norton Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, S. Berliner Conflict with: Trustee Crohn’s and Colitis UK, F. Bredin Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, M. Darvell Employee of: Crohn’s and Colitis UK, A. Forbes Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, M. Gay Conflict with: Vice-Chair and Trustee Crohn’s and Colitis UK, I. Nathan Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, E. Ream: None Declared, H. Terry Employee of: Crohn’s and Colitis UK.

PWE-121 Development And Psychometric Testing Of An Inflammatory Bowel Disease Fatigue (ibd-f) Patient Self-assessment Scale

Introduction Fatigue is one of the main symptoms of inflammatory bowel disease (IBD) and is frequently reported by people in both active and quiescent disease. Different fatigue assessment scales have been used to measure fatigue, but none has been developed or tested in IBD.1 This study aimed to develop a new fatigue scale specific to the needs and experiences of people with IBD. Methods A sequential mixed methods design was used: a qualitative phase (Phase 1) to assess patients’ experience of fatigue and four mixed qualitative-quantitative phases (Phase 2–5) to refine the scale and to assess its psychometric properties. Phase 1–4 participants were purposively selected from a group of volunteers who self reported their fatigue, and participants for Phase 5 were randomly selected from the Crohn’s and Colitis UK members database. Results 567 people participated in the 5 phases. The resulting IBD-F questionnaire has 3 sections: Section 1 Fatigue Assessment; Section 2 Fatigue Impact on Daily Activities; Section 3 Additional Comments about Fatigue. Initial validation suggests that the questionnaire has good face and content validity and acceptable to excellent test-retest stability (ICC 0.74 for section 1 and 0.83 for section 2) and a high degree of internal consistency with Cronbach’s alpha value of over 0.9. Conclusion The participants in the study confirmed that fatigue in IBD is burdensome. Items generated and refined by people with IBD-fatigue reflect their experience and form the basis of this new IBD-fatigue scale, which is psychometrically robust and its reliability falls within statistically acceptable ranges. The fatigue scores obtained by the newly developed, disease specific IBD-F self-assessment scale strongly correlated with the existing fatigue scales (MFI and MAF) developed with other diseases.2,3 The scale can be used by patients and practitioners to assess severity and impact of fatigue in people with IBD. An electronic copy of IBD-F scale can be accessed through website link http://www.fatigueinibd.co.uk from July 2014. References Whitehead L, The measurement of fatigue in chronic illness: a systematic review of unidimensional and multidimensional fatigue measures. J of Pain and Symptom Manag. 2009;37(1):107–28 Smets EM, et al. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J of Psychosom Research. 1995;39:315–25 Belza B, et al. Correlates of fatigue in older adults with rheumatoid arthritis. Nur Research. 1993;42(2):93–9 Disclosure of Interest W. Czuber-Dochan Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, C. Norton Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, S. Berliner Conflict with: Trustee Crohn’s and Colitis UK, F. Bredin Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, M. Darvell Employee of: Crohn’s and Colitis UK, A. Forbes Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, M. Gay Conflict with: Vice-Chair and Trustee Crohn’s and Colitis UK, I. Nathan Grant/research support from: Big Lottery Fund managed by Crohn’s and Colitis UK, E. Ream: None Declared, H. Terry Employee of: Crohn’s and Colitis UK, P. Bassett: None Declared.