Inflammatory bowel disease (IBD) is a chronic condition that affects approximately 20,000 people in Ireland. It is the umbrella term for ulcerative colitis and Crohn’s disease. 

IBD is a chronic, relapsing and unpredictable condition that typically affects an age group of 15 to 35-year-olds. It is a condition with periods of being very well to periods of repeated flare-ups. There is no cure and treatment varies from person to person. Treatments have improved considerably for patients diagnosed with IBD over the past 10 years but chronic conditions and the related symptoms can be difficult to come to terms with. 

Chronic fatigue

Fatigue is a problem associated with chronic conditions^1,2,3 and may be underestimated in young people with IBD. Farrell and Savage highlight that the symptoms are a complex phenomenon that have adverse effects on an individual’s life.⁴

There is a lack of clarity on the terminology used in relation to IBD and fatigue² and multiple definitions of fatigue exist.^2,5 Put simply, fatigue is also called exhaustion, tiredness or lethargy and a feeling of lack of energy and motivation that can be physical or mental or both. Many features of chronic conditions contribute to fatigue, including muscle weakness, pain, anxiety and disturbed sleep.⁶

Chronic fatigue is a common symptom of chronic conditions² and has a major impact on quality of life and the ability to function.⁶ It is a problem for patients because of the duration and its impact on quality of life. Fatigue, which is a common concern for IBD patients, is managed inadequately in Ireland.^1,6

The very nature of IBD being typically a younger person’s condition, may lead to an underestimation of fatigue in this cohort.

Objectives

While studying fatigue and IBD, three objectives were identified: 

• To assess fatigue in patients diagnosed with IBD related to relapse or remission status

• To assess symptom reporting of fatigue by healthcare professionals

• To raise awareness and provide a patient information leaflet. 

Fatigue severity scale

Fatigue is subjective and difficult to measure. Until recently, fatigue has not been measured routinely in many conditions. Various measures of fatigue are available⁷ but are not specific to IBD at the time of this study. 

The ‘fatigue severity scale’ (see Figure 1) designed by Krupp⁸ in 1989 was chosen as the scale of choice. It is a reliable and validated score designed to assess disabling fatigue in all individuals and to look at the connection between fatigue intensity and functional disability.⁹ It is easy to administer and can be completed quickly.

 (click to enlarge)

The ‘fatigue severity scale’ is used to measure fatigue in a variety of medical and neurological conditions. It consists of nine questions, using a seven-point scale, ranging from ‘strongly disagree’ to ‘strongly agree’. The scores are totalled from each question – a lower score indicates less fatigue in everyday life; a high score (mean > 4.0) indicates severe fatigue.

Methodology and results

A questionnaire was developed that included age, diagnosis, remission or relapse status, and whether the patient was asked about fatigue as a symptom by a healthcare professional. The fatigue severity scale was included with the questionnaire for completion. All questionnaires were anonymous.

A total of 52 questionnaires were completed by patients who attended the IBD outpatient department over a four-week period. Criteria included patients who had a diagnosis of IBD for one year or more. The age range was 19-68 (mean age of 42). A total of 24 males (46%) and 28 females (53%) completed the questionnaire.

In the diagnosis question, 18 (34%) had ulcerative colitis and 48 (66%) had Crohn’s disease. Of those who completed the questionnaire, 73% considered their condition to be in relapse and 27% considered their condition to be in remission.

Fatigue severity was measured using the fatigue severity scale. Only 7% reported no fatigue, with 19% reporting a mean score of < 4.0, which indicates that they suffer from fatigue. Severe fatigue (mean > 4.0) was reported by 74% of the respondents (see Figure 2).

 (click to enlarge)

A review of fatigue in relation to relapse/remission status revealed that patients in relapse had a higher mean score than those in remission. A total of 69% had a mean score of > 4.0, indicating severe fatigue during relapse. 

Symptom reporting of fatigue revealed that 38% were asked by a healthcare professional about fatigue as a symptom and 62% were not asked. This is in keeping with findings by Czuber-Dochan,¹ who found that patients who reported symptoms of fatigue were not taken seriously by healthcare professionals and fatigue was not addressed during consultations. 

Discussion

Fatigue has been identified as a problem for patients diagnosed with IBD. 

Patients who are in relapse are more fatigued than those in remission, which is in keeping with the findings of Czuber-Doochan.¹⁰ The findings indicated that fatigue is not only related to relapse but is ongoing for patients in remission. 

Symptom reporting is inadequate from healthcare professionals. Czuber-Doochan¹ highlighted that participants struggle to describe fatigue and that it is a poorly understood symptom that is frequently overlooked by healthcare professionals. 

Symptom assessment from the patient’s perspective is recommended as best practice.¹¹ Healthcare professionals need to consider fatigue as a symptom during assessment and give appropriate advice. Providing relevant written information on the management and treatment of fatigue would be considered appropriate for patients to understand the condition. 

Fatigue in IBD patient leaflet

I was asked in 2013 by the Irish Society of Crohn’s and Colitis to write an article for the quarterly magazine on a subject of choice. Fatigue was the immediate choice as I had noted the significant effects and impact of fatigue on patients with IBD. 

The feedback on the article, which acknowledged fatigue as a factor in IBD, was extremely positive from patients and healthcare professionals. 

A review of the literature relating to information on IBD and fatigue was unavailable for patients at this time. 

I developed the fatigue in IBD patient information leaflet in 2014. It is currently distributed to all gastrointestinal units in Ireland by Tillotts Pharma, which produces IBD information booklets for patients.

Conclusion

Fatigue is a neglected component of IBD and is a real symptom for patients during relapse and remission. IBD is pre-dominantly a young person’s condition and dealing with chronic fatigue as well as a chronic condition can have major implications on quality of life.

The fatigue and IBD patient information booklet provides information for patients on fatigue and how to manage it. 

Since then, Crohn’s and Colitis UK have completed an extensive four-year study on fatigue and developed a fatigue assessment score specifically for IBD patients.¹⁰ The study has advised that all patients with IBD should be screened for fatigue.

References

1. Czuber-Doochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. Aliment Pharmacol 2013; Ther :37; 505-516
2. Jorgensen R.  Chronic fatigue: an evolutionary concept analysis. J Advanced Nursing 2008; 63(2), 199-207
3. Wilson BS, Lonnfors S, Vermeire S. The true impact of IBD.  A European Crohn’s and Colitis patient Life Impact survey 2010-2011. http//efcca-solutions, net/media/jointhefight/Impact report.pdf
4. Farrell D, Savage E. Symptom burden: A forgotten area of measurement in inflammatory bowel disease. International J Nursing Practice 2012; 18: 497-500
5. Czuber-Doochan W, Dibley LB, Terry H, Ream E, Norton C.  The experience of fatigue in people with inflammatory bowel disease: an exploratory study. J Advanced Nursing 2012; 69(9), 1987-1999
6. Connolly D, O Toole L, Redmond P, Smith SM. Managing fatigue in patients with chronic conditions in primary care. Family Practice 2013; 30:123-124
7. Neuberger G.  Measures of fatigue. Arthritis & Rheumatism  2003; 49(58): 175-183
8. Krupp LB, Coyle PK, Doscher C, Miller A, Cross AH, Jandorf L. Halper J, Johnson B, Morgante L, Grimson R. Fatigue therapy in multiple sclerosis: Results of a double blind, randomised, parallel trial of amantadine, pemoline, and placebo. Neurology 1995:45:1956-61
9. Valko P. Validation of the Fatigue Severity Scale in a Swiss Cohort. Sleep 2008; Nov 1: 31(11): 1601-1607
10. Czuber-Doochan W.  Norton C, Bredin F, Forbes A, Nathan I, Berliner S, Darvell M, Gay M, Terry H.  Assessing fatigue in patients with inflammatory bowel disease. Gastrointestinal Nursing 2014; (12) 8; 13-21
11. McColl E. Best practice in symptom assessment: A review. Gut 2004; 53:iv49-iv54