New King's study offers fatigue breakthrough for patients with inflammatory bowel disease
As part of a four year research project into the causes and symptoms of chronic fatigue for the estimated 260,000 people living with Inflammatory Bowel Disease (IBD), School researchers, working with medical research and patient support charity Crohn’s and Colitis UK is addressing the ‘most over-reported and under-managed’ problem for people living with these debilitating medical conditions – fatigue [1].
From today, people with Crohn’s and Colitis will be able to measure the severity and impact of their fatigue objectively using the newly researched and validated IBD Fatigue Scale which is available on www.fatigueinIBD.co.uk
This new development is the product of the School's successful scientific partnership with researchers at University College London and the Addenbrookes’ NHS Trust.
Welcoming the launch of the Fatigue Rating Scale, Professor Christine Norton, Florence Nightingale School of Nursing and Midwifery, and principal investigator for the Fatigue project said; “Until now, patients with severe IBD Fatigue have struggled to overcome this debilitating, invisible symptom. We know that three quarters of people experience fatigue during a disease flare-up, but we also know that 40-46% of patients in remission continue to suffer badly with fatigue.
“The IBD Fatigue Scale will allow patients to discuss this under-recognised symptom with their healthcare professionals bringing them together to address and improve the treatment of this serious symptom. We hope that the new IBD Fatigue Scale will become fully integrated as standard good practice in all UK hospitals.”
Affecting 260,000 people, and the 10,000 newly diagnosed with Crohn’s and Colitis every year, fatigue is a deeply debilitating symptom and Crohn’s and Colitis UK is delighted to welcome the support of The Only Way is Essex (TOWIE) star, Sam Faiers, who suffered badly with Crohn’s disease-related fatigue while she was on Celebrity Big Brother, earlier in the year. Sam is helping Crohn’s and Colitis UK to fight IBD fatigue by improving awareness of this ‘hidden symptom’.
Sam Faiers said;, “The exhaustion I experienced was horrible, life limiting and a typically untreated symptom for people with Crohn’s or Colitis. This new Fatigue Scale is a break-through and will make talking to my doctors much, much easier. This really is great news for everyone with IBD.”
Helen Terry, Director of Patient Support and Information at Crohn’s and Colitis UK, sums up, “Some doctors and nurses are unaware of how much fatigue can affect people with IBD and many do not ask about it during an appointment. We are asking everyone with IBD to make sure that they have told their healthcare professionals about this under recognised symptom and suggest that they use this IBD Fatigue Scale to enable them to formally discuss their fatigue with their medical teams.
We hope that the Fatigue Scale will greatly improve the quality of discussions between patients and their doctors.”
ENDS
Reference:
1. Czuber-Dochan W. et al, Development and psychometric testing of inflammatory bowel disease fatigue (IBD-F) patient self-assessment scale, J Crohns Colitis (2014), http://dx.doi.org/10.1016/j.crohns.2014.04.013
Editors’ Notes – Background on the Fatigue Awareness Survey
Crohn’s and Colitis UK has been managing a four year, Big Lottery funded, project on Fatigue in inflammatory bowel disease (IBD), with research partners at the Florence Nightingale School of Nursing and Midwifery,King’s College London, University College London and Addenbrookes’ NHS Trust.
In January 2013, as part of the development of a fatigue rating scale, contacted members of Crohn’s and Colitis UK were contacted to assess their level of awareness of the IBD fatigue project and their views on the usefulness of the newly developed IBD-fatigue assessment scale.
Over 2100 Crohn’s and Colitis UK members were randomly selected and approached. 605 agreed to take part in the study, and 464 returned the completed questionnaire. From those who responded 51% were aware of the project and 90% were aware that IBD could cause fatigue. Despite the high level of awareness only 54% of patients had discussed fatigue with a healthcare professional and only 38% had asked for help. Of those patients who had asked for help only 27% (48 patients) were offered treatment and 5% were referred to sources of further information. We would hope that when the IBD-fatigue assessment scale is available, that we will see a greater number of patients discussing fatigue with their healthcare professionals.
The members who took part in the survey were sent a draft version of a new IBD-fatigue assessment scale, which had been developed by our research team, as part of extensive testing with patients, and 64% of patients said that the IBD-fatigue scale would make them more likely to seek help from a doctor or an IBD nurse in the future.
When asked how they would use the IBD-fatigue assessment scale, 86% said they would use it to assess their current level of fatigue, 88% would use it to monitor their fatigue levels over time. It was also considered a useful tool for opening up a dialogue about fatigue with healthcare professionals – as 69% said they would take the fatigue rating scale to their GP consultations, and 76% said they would take it to their consultations with a gastroenterologist. It was also considered a valuable tool for discussing fatigue with family and friends (49%) and for evidence when applying for disability benefits allowance (40%).
The overall value of the project and the fatigue assessment scale were given a positive endorsement, with 68% saying that the project in IBD-fatigue had increased their knowledge of IBD-fatigue and 72% stating that the fatigue scale will make them feel more confident in discussing problems related to fatigue.
The fatigue rating scale is now available on the Fatigue in IBD microsite with a self scoring facility.
About Crohn’s and Colitis UK - www.crohnsandcolitis.org.uk
Crohn’s and Colitis UK provides a valuable support network and information resource for people and families affected by Colitis and Crohn’s Disease as well as raising significant funds for research.
Since 1984, its members and supporters have raised almost £6 million and more than 150 research awards have been made to hospitals and universities throughout the United Kingdom. The charity’s 70 local Crohn’s and Colitis UK Groups across the UK enable its 28,500 members to meet other people who have these illnesses and share information and experiences.
Crohn’s and Colitis UK also campaigns for better healthcare services and seeks to raise awareness of these lifelong illnesses and their impact on people’s lives.
The Crohn’s and Colitis UK Information Line (daytime) 0845 130 2233 is available to members and non-members alike who have queries about all aspects of their disease. The Crohn’s and Colitis UK Support Line (afternoons and evenings) offers people a chance to speak to a trained volunteer who has Colitis or Crohn’s Disease. There is also a special Parent-to-Parent Helpline and a support line available for people claiming Disability Benefit.
Membership of Crohn’s and Colitis UK is open to anyone who has Colitis or Crohn’s Disease, their friends and families, health professionals and anyone who wishes to support the charity. Membership costs £15 per year and the charity offers free membership to 16-18 year olds. The charity’s services are open to all and not reserved for its members.
What Is Inflammatory Bowel Disease (IBD)?
Ulcerative Colitis and Crohn’s Disease are the main conditions described as IBD. They are lifelong conditions and most commonly first present in the teens and twenties (25% present in adolescence; median age at diagnosis is 29.5 years). Men and women are diagnosed in more or less equal numbers. The estimated number of people with IBD in the UK is at least 261,0001, although recently published data suggests that there may be as many as 620,0002.
It is important to note that IBD means Inflammatory Bowel Disease which is not the same as IBS; which means Irritable Bowel Syndrome. The latter is a functional disorder of the digestive system and is treated in a completely different way. However, some IBD patients may also have IBS.
The most likely age of diagnosis is between 16 and 29 years of age, although IBD can be diagnosed at any age, including the very young.
Clinical effects
The key effects of the disease are inflammation and ulceration in the colon and rectum (Ulcerative Colitis) or anywhere in the gastrointestinal tract (Crohn’s Disease). Crohn’s Disease can follow either of two patterns – stricturing disease (narrowing of the intestine causing obstruction) or fistulising disease (where the disease creates holes in the bowel wall that allow the faecal contents to leak out).
Both conditions can produce symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes. Malnutrition and weight loss are common with patients often altering their eating habits to alleviate symptoms. When diagnosed in childhood (about 25% of all cases) the disease is often more severe than if presenting in adulthood with major consequences on life-long morbidity.
IBD follows an unpredictable relapsing and remitting course with significant variation in the pattern and complexity of the symptoms both between patients and in the individual patient at different times in his or her illness.
Treatment
Aminosalicylates (5-ASA), corticosteroids and immunosuppressive drugs are the mainstay of medical management for inducing and maintaining remission. They suppress the symptomatic effects, but the extent to which they alter the natural course of the disease remains unclear. 30% of patients will fail to respond to these drugs or be intolerant of them and these patients may then be considered for anti-TNF@ biological therapies or surgery. Between 50% and 70% of patients with Crohn’s Disease will undergo surgery within 5 years of diagnosis.
Psycho-social effects
Education, employment, personal relationships, social and family life are all disrupted by the unpredictable occurrence of flare-ups. The frequent and urgent need for the toilet, together with loss of sleep and the invisible symptoms of pain and continual or profound fatigue, can severely affect self-esteem and social functioning, particularly among the young and newly-diagnosed.
For understandable reasons, a proportion of patients normalise an unnecessarily limited pattern of life either due to inadequate control of symptoms from poor medical management or because of the loss of self-esteem and deep anxiety about losing bowel control if they venture too far from familiar environments.
Cause
The causes of both Crohn’s Disease and Ulcerative Colitis remain unknown. There is a genetic predisposition which increases the risk of IBD about tenfold in first degree relatives of an IBD patient and which probably determines the pattern and severity of the disease in any individual patient. Much research is focused on understanding the role of bacteria in the gut and the many different parts of the immune system’s response to external triggers. It seems quite likely that the trigger for the disease varies between individuals.
Symptoms
IBD can produce symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes. Malnutrition and weight loss are common with patients often altering their eating habits to alleviate symptoms.
References:
1. Figures published by NICE guidelines, 2013.
2. Molodecky N et al. Increasing incidence and prevalence of the Inflammatory Bowel Diseases with time, based on systematic review. Gastroenterology, 2012 Jan; 142 [1]: 46-54
3. Crohn’s and Colitis UK publication: ‘Standards for the Healthcare of people who have Inflammatory Bowel Disease IBD’ © IBD Standards Group, 2013 Update.