Results of a European wide survey on the impact of IBD on life shows worrying figures

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) which represents patients of Crohn’s disease and ulcerative colitis (collectively known as inflammatory bowel diseases or IBD) recently conducted a Europe wide survey to provide an overview of the “real impact” of IBD on patients lives covering not only medical issues but also additional aspects such as quality of life, education, employment, relationships and others.

“The participation of over 6000 IBD patients throughout Europe has completely exceeded out expectations.” says Marco Greco, EFCCA chairman “sadly, the impact of IBD in our lives is sometimes still at an unacceptable levelas can be seen from the main findings of the survey”

On 25 October 2011 EFCCA will present the following main results of the IMPACT survey during the United European Gastroenterology Week in Stockholm:

Diagnosis:

Access to specialist care is usually good and most IBD patients receive a timely final diagnosis. Still, there are around 18 % of patients who wait for the diagnosis for a long time. This can be a period of uncertainty, significant life impact, morbidity, and distress - and could create a clinical risk as 64 % may need emergency care BEFORE the diagnosis.

Complications:

Many IBD patients experience co-morbidities or complications (49% have joint involvement associated with IBD, 34% experience skin involvement associated with IBD, 28.5% regularly use pain pills to relieve their IBD symptoms, 15% have complications of surgery such as adhesions, wound infections or pain).

Satisfaction with treatment:

Most IBD patients are ‘somewhat or very satisfied’ with their treatment plan, and their surgical outcome (if applicable). However, hospital admission in IBD patients is extremely high at 85 %, representing significant morbidity, and demand on health services. Access to biological therapy is becoming more established, although a minority of patients takes this treatment. Worryingly, the majority of patients have used corticosteroids, a high proportion experienced side-effects, and almost all were concerned about long-term effects.

Access to care:

Although specialist healthcare professionals are present, a quarter of people with IBD feel they do not have adequate access to them. Access to care needs to be improved, as does the quality of communication in consultations (some patients feel they do not get to ask the questions they want to.)

Daily life:

Half of people with IBD are fighting active disease today. Most IBD patients (83%) experience significant symptoms, regardless of whether they are in remission or not. Fatigue, as an example, is often experienced also when in remission.

Work and Education:

Most IBD patients (74 %) have taken time off work in the last year due to IBD – most startling, over a quarter of respondents had been absent from work for over 25 days in the last year. Disease severity and ability to work seem to correlate. The majority feels stressed or pressured about taking time off. 25 % of IBD patients have received complaints or unfair comments at work, or suffered discrimination. Most patients are fully employed, but some are under- or unemployed because of IBD.

Relationships:

IBD has significant negative social effects, and in particular is responsible for preventing, or causing the end of intimate relationships for an alarming proportion of people (40 % ). However, meeting others with a similar condition, or becoming part in patients’ organizations creates optimism. 63 % of respondents felt that m embership of a patients’ organization has a beneficial impact on life as a whole.  

Conclusions:

Even with the availability of immunosuppressive and biological therapies for more than a decade and adequate access to care, the impact of IBD on patients’ lives is immense. This European survey offers new angles on how to further reduce the burden of disease, and important recommendations for treatment and care.

The IMPACT survey is supported by an educational grant from Abbott, the global healthcare company.

For more information please contact Isabella Haaf, communication manager at This e-mail address is being protected from spambots. You need JavaScript enabled to view it. or tel: +34 606849937.

About EFCCA

EFCCA is a pan-European umbrella organisation comprising of 27 national inflammatory bowel disease (IBD) patients’ associations.  Its main objective is to improve the well-being, quality of life and quality of care of people with IBD of all ages, working both at European level and alongside member associations; to improve public awareness of IBD and the concerns of European patients; to encourage research into the disease; and to promote equality of opportunity for people affected by IBD.