nflammatory bowel diseases (IBD) suchas Crohn’s disease and ulcerative colitis

are among the catalogue of maladies, whichbecome lifelong nasty companions: chronicdiseases. IBD are chronic inflammatory dis-orders of the gastrointestinal tract, affectingabout three million people in Europe whosedisease is never fully conquerable.

Patients experience periods when theirdisease flares up and causes symptoms, i.e.diarrhoea, rectal bleeding, abdominal crampsand pain, fever, loss of appetite, weight lossand fatigue, followed by periods of remissionwhen patients may not notice symptoms at

all. This is why IBD and their related sym-ptoms are sometimes considered less „soci-ally acceptable” adding an extra psycholo-gical strain on patients.

The incidence of IBD has increased duringthe 20th century in Western Europe andNorth America, IBD are diseases of modernsocieties. They are still on the rise as a re-cently published study shows. Based on datafrom the Danish National Patient Registry

the authors concluded that „the incidencerates of ulcerative colitis (UC) and Crohn’sdisease (CD) have continued to increase.”→The mean incidence rate for UC increasedfrom 1995 to 2011 by 60 percent in womenand by 70 percent in men. → For CD the rates increased during thesame time by 30 percent in women and by60 percent in men.

IBD have a detrimental impact on quality oflife and the ability to work. A study in a largepopulation-based cohort of patients withCD in Sweden shows that CD has an even

greater negativeeffect on qualityof life than UC.This differencewas pronouncedfor women. EFCCA believesthat patients un-derstand the im-pact of theirdisease on theirlives often farmore than theirclinician. This iswhy EFCCAlaunched the IM-PACT survey tolearn more about

the patients’ perspective and the experienceof their disease in different countries. Whatimpact has IBD on their lives, on social relati-ons, their education, their job and careers?How do patients experience the quality of healthcare as well as their access to health-care and support facilities in different coun-tries? The results shed light on aspects of thedisease, which are of utmost importance forpatients and their every day living but are notnecessarily in the focus of research.

The IMPACT survey was a joint project of EFCCAand its national member associations. It was laun-ched in November 2010 and closed in August 2011.IMPACT II is now on-going in several other coun-tries in and outside Europe. The main aim of thesurvey was to obtain an international perspectiveof the impact of Inflammatory Bowel Disease(IBD) on patients’ lives. Individual member orga-nisations of EFCCA in various European countrieswere responsible for the launch and communica-tion of the survey to their own members. This happened in different ways in different countries. In all countries it was a self-selection online-surveyand participation was optional. It is therefore notto be considered a completely random surveythough it provides relevant insights into the per-spective and perceptions of patients with thisdisease in different countries. 4,670 online responses that had been received bythe close of the survey were included in the analy-sis. The survey was supported by an unrestrictededucational grant from Abbott.The survey has received wide recognition from thescientific community and its poster presentationat the ECCO Congress in 2012 was awarded a„poster of distinction ribbon”. It was also recentlypublished in the Journal of Crohn´s and Colitis. (J Crohns Colitis. 2014 Mar 21. pii: S1873-9946(14)00102-0. doi: 10.1016/j.crohns.2014.03.005. [Epub ahead of print])

May 2014

THE IMPACT SURVEY

EUROPEAN FEDERATION OF CROHN ’ S A N D UL CER A T I V E CO L I T I S A SSO CI A T IONS (E FCCA)

Giving Patients with IBD a Voice Patients often understand the impact of a chronic disease on theirlives far more than clinicians. This is why their perspective on IBDwas at the centre of the IMPACT study, a pan-European survey.

European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA)Rue des Chartreux 33-35 · B-1000 Brussels Tel/Fax: +32 2 540 8434http://www.efcca.org · bella.haaf@efcca.org

Theof Inflammatory BowelDiseases (IBD)

4600 patients spoke out in the first pan-European survey to call attention to their experience with IBD and it’s impact on their lifes

A European Crohn’s and Ulcerative Colitis Patient Life 2010 – 2011

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atients with IBD have not only to conquer the emotional challenges of

an incurable illness. Even when they are in remission and don’t have to confront theirdisease, this can change from one day toanother. Anytime something can happen toremind them that their disease is inescap-able, their shadow: most patients will expe-rience a relapsing and remitting course oftheir disease.

Somewhat shockingly, the IMPACT survey shows that 83 percent of the respondents at least once a week even between flares feeling tired, weak or worn-out. Some respondents report to have allsymptoms between their flares.

Diagnosis may be delayed as the result ofthe many signs and symptoms of IBD. This iswhy EFCCA’s IMPACT survey shows thatonly 54 percent of the respondents receiveda final diagnosis within a year from onset ofsymptoms, one third got diagnosed withinthe first six months. But notably 17 percentof the respondents had to wait more thanfive years. Generally younger people werenot only diagnosed faster but also saw a spe-cialist earlier than adults. In the first sixmonths after onset of symptoms 40 percentof the younger people received the diagno-sis and 63 percent met a specialist.

The management of IBD is changing: theintroduction of so called biologics has im-proved treatment and treatment goals have

Advances in the understanding of IBD paved the way to newtreatment concepts as well as to novel drugs. This also requiresto improve communication between physicians and patients.

been changed and expanded to include healing of the lining of the intestine. Moredrugs to modulate the immune system are indevelopment. „They will cause treatmentapproaches to evolve further”, as an expertstates in the US-journal JAMA.

As the IMPACT survey shows, 5-amino-salicylates (ASA) are still the most com-monly taken drugs, especially by patientswith ulcerative colitis (UC). More than halfof the respondents had taken corticoste-roids and about one third were treated withimmunosuppresives.

Latest US and European treatment guide-lines recommend against use of 5-amino-salicylates to treat Crohn’s disease. So bio-logical drugs are on the rise at least in thetreatment of this illness: The IMPACT survey shows that 36 percent of patientswith Crohn’s disease and 12 percent of patients with ulcerative colitis were treatedwith biologicals. About 56 percent of re-spondents were satisfiedwith their treatment plan.

The IMPACT surveyshows that hospitalizationis common. The majorityof patients – 85 percent–had been hospitalized inthe past five years. This applies especially to pa-tients with CD of whom 89 percent hadbeen in hospital.

Patients having frequent relapses of theirdisease despite optimal medical treatmenthave few options other than surgery. This iswhy not surprisingly 40 percent of IMPACTrespondents had surgery due to IBD, two

percent had even more than ten surgeries.The majority was satisified with the surgeryoutcomes.

Communication with the physician can often be less satisfying for many patients andfor patients with IBD as well. Most of the respondents of the survey felt that their gastroenterologist should have asked moreprobing questions to understand their diseasestatus and 54 percent felt that they did notget to tell something important to their physi-cian. 69 percent felt they had adequate access to their IBD professional and 65 per-cent reported that their gastroenterologistwas best at giving them sufficient time at theconsultation.

Managing a Complex DiseaseINFLAMMATORY BOWEL DISEASE AND HEALTHCARE

In Poland you still do not have the same access to care foreveryone, it all depends where you live. If you live in thecountryside, away from an IBD care center, you might notget the adequate treatment on time or with a delay thatmight have serious consequences on your healthcare.Marek Lichota, Poland

„When I was diagnosed, I wasn't explainedvery thoroughly what I was dealing with. I didn't really even understand it was a chronic illness. I've been treated by manydoctors in the sixteen years that I've hadCrohn's disease, and while some of themhave been wonderful, with some I have feltlike they are already pushing me out of thedoor when I still have questions to ask.”Sanna Lönnfors, Finland

→ 54% of respondents had received a final diagnosis within a year from noticing first symptoms

→ 69% of respondents saw a special-ist in the first year of their illness

→ 17% had to wait more than five years to receive a final diagnosis

→ 56% were satisfied with theirtreatment plan

→ 40% had been operated due to IBD

→ 73% of the patients who had been operated where satisfied withthe outcome

→ 54% didn’t get to tell the specialist something important attheir appointment

FACTS AT A GLANCE

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