1. United we Stand Page 1 Supported by an educational grant from Abbott Country Report - Germany IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey First full results – November 2011 Country Report - Germany

2. United we Stand Page 2 Supported by an educational grant from Abbott Country Report - Germany BACKGROUND Survey Solutions was commissioned by EFCCA to conduct the IMPACT survey in late September 2010 The main aim of the survey was obtain an international perspective of the impact of IBD on patients lives Other research objectives included: a)Understanding perceptions of the quality of Health Care provided b)Looking at access to healthcare and support facilities in various countries (from the perspective and perceptions of the patient) c)Understanding more about the differences that exist between countries, age groups, genders and those with different types of IBD This project was carried out in compliance with, and to the Quality Standards required under: –The Data Protection Act –ISO 9001:2008 (for Quality Management Systems) –The MRS (Market Research Society) Code of Conduct –The MRS Company Partner Quality Commitment

3. United we Stand Page 3 Supported by an educational grant from Abbott Country Report - Germany METHODOLOGY The survey questionnaire was developed by EFCCA in conjunction with Abbott. Some final minor edits were suggested by Survey Solutions prior to the survey’s launch Online and printed versions of the questionnaire were developed by Survey Solutions, and made available in 10 languages: English, Dutch, French, German, Hebrew, Italian, Portuguese, Slovenian, Spanish, and Swedish The survey was launched on 29 th November 2010. Individual country organisations of EFCCA were responsible for the launch and communication of the survey to their own members, and this happened in different ways in different countries In all cases, it was a self-selection survey and participation was entirely optional. It cannot therefore be considered to be a completely random survey, and the findings are not necessarily representative of the entire population of IBD patients either overall, or by the defined sub-groups The survey finally closed on 5 th August 2011. An interim report was produced in February 2011 based on the first 1,547 responses received, but these were less broadly spread by country than in this final report By the close, we had received a total of 4,995 responses. An important original aim of the project was to achieve at least 100 responses from each of at least 10 countries. In the final event, this was achieved in 14 countries.

4. United we Stand Page 4 Supported by an educational grant from Abbott Country Report - Germany Final Response Rate by Country Final Response Rate Total = 4995

5. United we Stand Page 5 Supported by an educational grant from Abbott Country Report - Germany RESPONSE RATE IMPORTANT NOTE This report reflects the respondents to this survey – which is not necessarily the same as the population of IBD patients as a whole in Germany. In total, 386 responses were received from IBD patients in Germany. The most important characteristics of the sample who responded are: Forms of IBD: 94% of respondents have Crohn’s Disease 4% have Ulcerative Colitis Gender: 71% of response was from women 29% of response was from men Age group: 91% of response was from 19-54 year olds

6. United we Stand Page 6 Supported by an educational grant from Abbott Country Report - Germany REPORT FORMAT This report now goes on to look at each section of the questionnaire in more detail: Section A – Your experience with IBD Section B – Health care Section C – The impact that IBD has on your life Section D – Overall work IMPACT Section E – Overall Life IMPACT

7. United we Stand Page 7 Supported by an educational grant from Abbott Country Report - Germany

8. United we Stand Page 8 Supported by an educational grant from Abbott Country Report - Germany MOST COMMON FORMS OF IBD (Q1) NB The following may reflect the profile of the population that was invited to take part in this survey, rather than being typical of the situation in this country. Crohn’s Disease is the most prevalent form of IBD affecting respondents to the survey (94% say they have this). There are only 15 responses from people with Ulcerative Colitis The survey findings for Germany are therefore very heavily skewed towards people with Crohn’s Disease, and should be seen in this context.

9. United we Stand Page 9 Supported by an educational grant from Abbott Country Report - Germany WORKING PATTERNS Looking at Employment and Disability Status, the Fully Employed is the largest group of respondents to the survey, representing 49% of the total. There is also a high proportion of disabled respondents, who account for 33% of the total response. Unemployed respondents total 29 (7.5%), and the under-employed total a further 27 responses (7%).

10. United we Stand Page 10 Supported by an educational grant from Abbott Country Report - Germany BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 36.5% of respondents saw a specialist within 6 months of their symptoms starting, 24.5% did so within 6 months to a year thus, 61% of all respondents saw a specialist within the first year of their illness There are some differences between the genders and age groups on this: A higher proportion of men were seen within 12 months (68%) than women (58%) Those aged 35 and above have to wait longer (and those aged 55 and above seem to wait the longest)

11. United we Stand Page 11 Supported by an educational grant from Abbott Country Report - Germany GETTING A DIAGNOSIS (Q2 & 4) 47% of respondents said that they presented their IBD symptoms at an emergency department or emergency clinic at least once before they received a definitive diagnosis. 26% had to visit at least twice or more, and 11% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 51% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: 24% got their diagnosis in less than 6 months For another 27% it took 6 months to 1 year Men (23%) were marginally less likely than women (25%) to be diagnosed within 6 months 14% of respondents say it took 1 – 2 years to get a diagnosis Almost 1 in 5 respondents (19.5%) claim that it took them at least 5 years to get a diagnosis Whilst it seems that diagnosis of the over 55 age group may take longer, this is based on a very small sample in Germany (only 27 people in this age group)

12. United we Stand Page 12 Supported by an educational grant from Abbott Country Report - Germany IMPORTANT ATTRIBUTES OF IBD PATIENTS (Q5): Respondents were asked to tick a number of aspects, if they applied to them, and the following summary statistics apply to the overall sample for this survey: 67% have used steroids for their condition 55% have joint involvement associated with IBD 51% are concerned about the long-term effects of steroids on their health 46% keep steroids on hand in case of an IBD flare 43% experience skin involvement associated with IBD 42% experience side-effects from steroids 28% regularly use pain pills to relieve their IBD symptoms 25% have complications of surgery such as adhesions, wound infections or pain

13. United we Stand Page 13 Supported by an educational grant from Abbott Country Report - Germany

14. United we Stand Page 14 Supported by an educational grant from Abbott Country Report - Germany SATISFACTION WITH THE TREATMENT PLAN: (Q16) 81% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 8% say that they are either somewhat or very dissatisfied Men are slightly more satisfied than women (85% versus 80%), as are 19-34 year olds (86%) compared to 35-54 year olds (78%). Those who are least satisfied are the retired, unemployed and ulcerative colitis groups.

15. United we Stand Page 15 Supported by an educational grant from Abbott Country Report - Germany MEDICATION Only 5% of respondents in Germany are not taking any medication currently, and very few respondents (1%) say they do not know what they are taking now. The medicine most likely to be taken at the moment: –77% are taking biologic drugs –23% claim to be taking drugs that affect the immune system (slightly more women than men) –22% are taking corticosteroids (slightly more women than men) –19% claim to be taking Aminosalicylates (5-ASA) (slightly more men than women)

16. United we Stand Page 16 Supported by an educational grant from Abbott Country Report - Germany FREQUENCY OF HOSPITALISATION: (Q8) 87% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (47% for 1 – 5 days and 39% for longer than that).

17. United we Stand Page 17 Supported by an educational grant from Abbott Country Report - Germany OPERATIONS: (Q6 & 7) 45% of respondents have not had a surgical operation to treat their IBD or IBD- related problems. However, 15% have had one operation, 11% have had two operations, and 29% have had 3 or more. –17% of all respondents have had 5 or more operations. –Younger patients are least likely to have had an operation People whose ability to work has been affected by their condition are more likely to have had more operations, compared to those in full employment The majority of people who have had an operation (69%) are very or somewhat satisfied with the outcome – but 12% express dissatisfaction. Satisfaction is slightly higher amongst men, but lower than average for the under 35 age groups

18. United we Stand Page 18 Supported by an educational grant from Abbott Country Report - Germany AT THE CLINIC (Q17 – 24) 75% say that their clinic has a Specialist Gastroenterologist, 30% are aware of their being a ‘family/general physician clinic/service, or internal medicine doctor’ and 27% say they have a Nurse who understands or specialises in IBD. Most people (82%) feel they do have adequate access to their IBD professional, compared to 15% who say they do not 39% feel that at their appointment they didn’t get to tell the gastroenterologist something that was important –17% say this happens sometimes, –22% say it happens a lot. 54% say they wish that the gastroenterologist had asked more probing questions –22% say they wish this at least 75% of the time

19. United we Stand Page 19 Supported by an educational grant from Abbott Country Report - Germany AT THE CLINIC Communicating with healthcare professionals (Q21/22) Specialist/Gastroenterologist service practitioners are thought to provide the best range of options for patients to get in touch, voted for by 82% of respondents (rising to 85% for female respondents). This is followed by Family/general physician clinic/service (49%) The same proportions, with minor differences, apply to all the employment and disability groups. Specialist/gastroenterologist (70%) and Family/general physician clinic/service practitioners (42%) are seen as being best at returning calls promptly, followed by Other (8%).

20. United we Stand Page 20 Supported by an educational grant from Abbott Country Report - Germany AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 69% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, 47% say that their family/general physician clinic/service does this Understanding how IBD impacts on your life (Q24) 66% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, compared to 43% who believe that this applies to the Family/general physician clinic/service practitioner, and 12% say that it applies to the counsellor/psychologist Men (more than women) are inclined towards thinking that the Specialist/Gastroenterologists understand the impact better.

21. United we Stand Page 21 Supported by an educational grant from Abbott Country Report - Germany

22. United we Stand Page 22 Supported by an educational grant from Abbott Country Report - Germany CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 59% of respondents claimed to be in remission/not flaring (more men than women), whilst 30% had chronically active conditions (more women than men), and 10% were suffering periodic active flare ups.

23. United we Stand Page 23 Supported by an educational grant from Abbott Country Report - Germany EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 23% of the sample claim that their last flare had been over 12 months ago. By contrast, 19% had experienced a flare in the previous month, and a further 14% had experienced one between 1 and 3 months ago –a total of 33.6% within the last 3 months as a whole. Those who were unemployed due to their IBD are most likely to have suffered a recent flare(31% in the last month)

24. United we Stand Page 24 Supported by an educational grant from Abbott Country Report - Germany NUMBER OF FLARE-UPS EXPERIENCED (Q27) 20% of respondents claimed that their condition was always flaring (23% of women, and 13% of men), whilst only 7% claimed that they had experienced no flare at all in the past two years A further 11% claim to have experienced at least 7 episodes in the past two years, whilst 41% have experienced between 1 and 3 episodes. Chronic flaring is more likely amongst Retired and Disabled groups, and those who are under- employed, but is far less (14%) amongst the fully employed. This seems to indicate a fairly clear cause-and-effect relationship between severity of the IBD condition, and ability to work.

25. United we Stand Page 25 Supported by an educational grant from Abbott Country Report - Germany COPING WITH IBD FLARE-UPS (Q28) 44% claimed that during their most recent flare up, they were somewhat more likely than not to have had to cancel or reschedule an engagement or meeting because of their symptoms. At the other end of the scale, only 26% felt that their plans were not really disrupted. Women appear more likely than men to have planned events disrupted by their condition.

26. United we Stand Page 26 Supported by an educational grant from Abbott Country Report - Germany FREQUENCY OF IBD-RELATED SYMPTOMS The following 5 slides summarise the extent to which people living with IBD have to deal with symptoms of IBD on a daily basis – both during their most recent flare, and when they are between flares. A clear picture emerges of fairly consistent disruption to daily lives of those living with IBD. On many of these aspects, for many respondents, there seems to be only a limited respite from IBD-related symptoms when they are between flares. Respondents were asked to think about their most recent experience, when responding.

27. United we Stand Page 27 Supported by an educational grant from Abbott Country Report - Germany INCIDENCE OF BLEEDING (Q29/36)

28. United we Stand Page 28 Supported by an educational grant from Abbott Country Report - Germany INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

29. United we Stand Page 29 Supported by an educational grant from Abbott Country Report - Germany INCIDENCE OF FEELING TIRED, WEAK, OR WORN OUT (Q31/38)

30. United we Stand Page 30 Supported by an educational grant from Abbott Country Report - Germany URGENCY OF BOWEL MOVEMENTS (Q32/39) DURING A FLAREBETWEEN FLARES None12%34% At least daily88%66% 5 – 7 days a week 59% (41% = 7 days) 22% Most affectedAll groups significantly affected Women; generally increases with age Least affected-Men, fully employed

31. United we Stand Page 31 Supported by an educational grant from Abbott Country Report - Germany FREQUENCY OF RUNNY STOOLS/ EPISODES OF DIARRHOEA (Q33/40)

32. United we Stand Page 32 Supported by an educational grant from Abbott Country Report - Germany OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35) Referring back to their most recent experience of being between flares: 25% say their life is significantly impacted by their IBD symptoms, compared to people without IBD, and a further 25% say that it is slightly affected. There is no difference between men and women on this aspect –There is a tendency for the life impact to increase with age –It is more likely to impact the unemployed and under-employed groups 59% say they hardly ever/never have to cancel or reschedule an engagement or meeting because of their bowel disease, but 33% report that it can be necessary – particularly

33. United we Stand Page 33 Supported by an educational grant from Abbott Country Report - Germany

34. United we Stand Page 34 Supported by an educational grant from Abbott Country Report - Germany 67% of respondents say they feel stressed or pressured about taking time off work due to IBD 17% have not had any time off in the past year, due to IBD – but 83% have 36% have had more than 25 days absence (increasing to over 60% of the unemployed and under- employed groups. This is also higher amongst women (39%) than men (29%) While 66% have not made adjustments to their working life to avoid having to take time off, 34% say that they have. INCIDENCE OF BEING ABSENT FROM WORK

35. United we Stand Page 35 Supported by an educational grant from Abbott Country Report - Germany THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Cramping or painful abdomen (57%) Fatigue, and/or not enough energy to get through the day (53%) Doctor’s appointment (52%) Hospital/emergency department visit (43%) ATTITUDES IN THE WORKPLACE: (Q47/48) 30% claim that they have been the victims of complaints or unfair comments about their performance –in relation to their illness. This increases to 56% for those who are unemployed. 79% deny that they have suffered from discrimination in the workplace, but 21% say that they have (rising to 52% of those who are unemployed) (Q48)

36. United we Stand Page 36 Supported by an educational grant from Abbott Country Report - Germany HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): 28% of those who took part in the survey said that their IBD does not affect their behaviour at work (with those in full employment being the least affected). For the rest (72%) the most prevalent effects of IBD seem to be: 1.Not participating in social activities at work (25%) 2.Being quiet or quieter during meetings (25%) 3.Being less motivated (23%) 4.Being irritable at work (18%)

37. United we Stand Page 37 Supported by an educational grant from Abbott Country Report - Germany HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 68% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 39% of respondents feel this very strongly. The negative effect is felt most strongly by the unemployed, under-employed, and the disabled. 51% of respondents say that they have lost or have had to quit a job because of their IBD.

38. United we Stand Page 38 Supported by an educational grant from Abbott Country Report - Germany

39. United we Stand Page 39 Supported by an educational grant from Abbott Country Report - Germany INTIMATE RELATIONSHIPS (Q52/53) 41% of all respondents say that their IBD has prevented them from pursuing intimate relationships. This is slightly more likely to apply to women than men. 25% claim that their condition has caused an intimate relationship to end. This varies between genders, applying to 28% of women, and 19% of men. MAKING FRIENDS (Q54) 45% of respondents claim that their IBD has got in the way of their ability to make or keep friends, compared to 43% who said it has not

40. United we Stand Page 40 Supported by an educational grant from Abbott Country Report - Germany EDUCATION (Q55) Just over half of those who took part in the survey (56%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting It is an even more prevalent issue for those who are under- or unemployed.

41. United we Stand Page 41 Supported by an educational grant from Abbott Country Report - Germany AVAILABILITY OF TOILETS (Q56) This is a significant problem for people with IBD conditions, and levels of concern tend to increase with age. 24% of respondents claim that other people sometimes joke about their frequent need to go to the toilet 67% worry about the ready availability of toilets whenever they go somewhere new 74% frequently consider the availability of toilets when they plan to attend something 32% keep a list of clean, accessible toilets and consider this when they leave home 21% of respondents say they have had to be rude to people at times in order gain access to a toilet

42. United we Stand Page 42 Supported by an educational grant from Abbott Country Report - Germany EFFECTS ON SLEEP (Q56) 48% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women even more than men (54% compared to 34%) and those who are under- or unemployed more than those who are working full time.

43. United we Stand Page 43 Supported by an educational grant from Abbott Country Report - Germany THE BENEFITS OF BEING IN CONTACT WITH PEOPLE WHO UNDERSTAND WHAT IT’S LIKE TO HAVE IBD Others with a similar condition: (Q57) The first time respondents met someone else with IBD seems to have had little effect on many of them, but a significant proportion (32%) said that it made them more optimistic EFCCA and similar patient associations: (Q58 – 60) 29% of respondents have engaged in some way with EFCCA member associations Importantly, 59% of those who have joined a relevant patients’ association say that doing so has had a beneficial impact on their life as someone with IBD.

44. United we Stand Page 44 Supported by an educational grant from Abbott Country Report - Germany LEVEL OF INVOLVEMENT WITH A PATIENTS’ ASSOCIATION The most likely ways that people are associated with a member association are : 1.Receiving patient information leaflets from their national IBD association (21%) 2.Subscribing to newsletters or magazines from their national IBD association (18%) 3.Attending local or national patient meetings (14%) 4.Signing up to be a member of their national IBD association (12%)

45. United we Stand Page 45 Supported by an educational grant from Abbott Country Report - Germany CONTACT DETAILS For more information about EFCCA, national IBD associations, or the IMPACT survey, please visit the IMPACT web portal, at www.efcca-solutions.net/impactwww.efcca-solutions.net/impact Email ben.wilson@efcca.orgben.wilson@efcca.org European Federation of ulcerative Colitis and Crohn’s Associations (EFCCA) Rue Des Chartreux 33-35, Brussels, 1000, Belgium