Health Professionals Survey – Fatigue and IBD

Marcia Darvell (Crohns and Colitis UK) and Professor Christine Norton (Buckinghamshire New University)

Crohns and Colitis UK have been awarded a £481, 242 grant by the Big Lottery Fund for a project on fatigue in IBD. The 4 year research project will examine the causes of fatigue and will pilot a fatigue assessment tool and interventions to improve the management of fatigue in IBD. The research is being carried out with our partners at Kings College London, University College London, Buckinghamshire New University and Addenbrookes NHS Trust.

The project is divided into a number of work packages. Currently, we have interviewed twenty volunteers with IBD. We will use these data to develop a fatigue assessment tool which we will pilot with people living with IBD.

To help us understand the level of awareness and information needs of fatigue in IBD among healthcare professionals, we distributed questionnaires at the BSG conference in 2011, and sent the questionnaire to IBD nurses as an online survey.

The survey has several limitations, particularly its self selected and relatively small sample (94 health care professionals). Despite this, the survey indicates a need for greater information on fatigue and IBD.

Respondents comprised: 42.6% IBD Nurse Specialist, 35.1% gastroenterologists, 22.3% other health care professional. We asked health care professionals how often IBD patients report fatigue to them - 37.2% responded 'sometimes', 35.1% 'often' and 20.2% 'very often'. Only 7.4% of respondents stated that patients rarely reported fatigue.

Most respondents' usual course of action, when faced with a patient presenting with fatigue with IBD in remission would be to check the haemoglobin level and treat if low (92.5%). Other frequent responses chosen were referral for other diagnostic tests (41.9%), advice on diet (36.6%), advice to take more exercise (33.3%) and advice to get more rest or sleep (31.2%). Actions mentioned by respondents in the open ended response section of this question, included:

  • Check disease activity and inflammatory markers
  • Holistic interview identifying stressors
  • Referral to IBD nurse, dietician or psychologist (the need for psychological support or referral was mentioned by many respondents)
  • Check drug side effects
  • Assess for depression

Despite 55.3% of respondents indicating that their patients often or very often report fatigue, and 92.6% of respondents indicating that patients report fatigue as a problem more frequently than 'rarely', the level of self rated knowledge among health care professionals was low:

  • 27.7% indicated that they had poor knowledge of the likely causes of fatigue in IBD
  • 59.6% rated their knowledge as 'fair'
  • only 13.8% rated their level of knowledge as good or excellent.

The survey results indicate that 40.4% health care professionals who responded actively raise the topic with their patients (often, very often or always). However, 33% only raise the topic 'sometimes', 18.1% only 'rarely' raised the topic and 8.5% stated that they never raise fatigue with their patients. As the survey was filled out by a self selected group of respondents who are likely to have above average interest in fatigue, the results suggest that there is a need to increase the profile of fatigue.

A high percentage (68.9%) of health care professionals surveyed consider that IBD fatigue can be adequately treated in most or some patients,. However, given the perception of it being a treatable condition, the comparative reticence to ask about fatigue in clinics is more perplexing.

General comments included:

"I would like to receive some evidence based information to give advice to these patients"

"Fatigue is common and I think approach should be multidisciplinary including dietician, psychologist, gastroenterologists"

"Its effects are underestimated and poorly understood"

"It is the single most difficult symptom to manage as those who experience don’t seem to get any benefit from current strategies"

"I work with children and young adults, the latter in particular struggle with fatigue. It affects their ability to interact with their peers both at school and socially, this has long term implications for them in adulthood"

"Complex, under-rated, no resources to deal with it (psychologically) difficult to define, but common"

"I believe that fatigue is a major issue but unfortunately still poorly recognised as a problem to IBD patients"

"Very undertreated in primary care"

If you would like to help with our research (by volunteering for an interview) or have any comments or queries on the project please email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

A microsite dedicated to the project will be available on the Crohns and Colitis UK webpage in August 2011: