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

2. United we Stand Page 2 Supported by an educational grant from Abbott Country Report: Austria 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: Austria 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: Austria 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: Austria 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. A total of 120 responses were received from respondents in Austria. The most important characteristics of the Austrian sample are: Forms of IBD: 65% of respondents have Crohn’s 33% have Ulcerative Colitis Gender: 57% of response was from women 43% of response was from men Age group: Majority of responses (88%) were from 19-54 year olds

6. United we Stand Page 6 Supported by an educational grant from Abbott Country Report: Austria 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: Austria

8. United we Stand Page 8 Supported by an educational grant from Abbott Country Report: Austria 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 of the inflammatory bowel conditions affecting respondents to the survey (65% say they have this) Women (67%) are slightly more likely to suffer from Crohn’s than men (63%) Conversely, male respondents (37%) are slightly more likely to suffer from Ulcerative Colitis than women (29%).

9. United we Stand Page 9 Supported by an educational grant from Abbott Country Report: Austria IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is fully employed (64 responses) with 66% having Crohn’s Disease and 33% having Ulcerative Colitis. The next largest group is the disabled category, where 78% have Crohn’s and 19% have ulcerative colitis Many of the other groups in this classification are rather too small to comment on, However, Of the 5 who say they are under-employed due to IBD, –4 have Crohn’s Disease and –1 has Ulcerative Colitis Of the 12 who say they are un-employed due to IBD, –9 have Crohn’s Disease and –2 have Ulcerative Colitis –1 has indeterminate colitis

10. United we Stand Page 10 Supported by an educational grant from Abbott Country Report: Austria BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most respondents: 39% of respondents saw a specialist within 6 months of their symptoms starting, 18% did so within 6 months to a year thus, 57% 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: Men are slightly more likely to see a specialist within a year of their symptoms starting than women. This applies to 61% of men, but only 53% of women. Respondents in the age group 19-34 are most likely to be diagnosed quickly (56% reported that this happened within 6 months, and 68% within a year) Those aged 35 and above have to wait much 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: Austria GETTING A DIAGNOSIS (Q2 & 4) 86% 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 38% had to visit at least twice or more, and 10% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 39% 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 15% it took 6 months to 1 year Men (28%) were slightly more likely than women (22%) to be diagnosed within 6 months However: 17% of respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 17% had to wait 5 years or more for a diagnosis. Ulcerative Colitis tends to be diagnosed much more quickly than Crohn’s Disease: 41% were diagnosed within 6 months, compared to 17% respectively

12. United we Stand Page 12 Supported by an educational grant from Abbott Country Report: Austria 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: 41% have used steroids for their condition 37% have joint involvement associated with IBD 36% keep steroids on hand in case of an IBD flare 33% are concerned about the long-term effects of steroids on their health 31% experience skin involvement associated with IBD 18% experience side-effects from steroids 16% regularly use pain pills to relieve their IBD symptoms 15% 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: Austria

14. United we Stand Page 14 Supported by an educational grant from Abbott Country Report: Austria SATISFACTION WITH THE TREATMENT PLAN: (Q16) 81% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 11% say that they are either somewhat or very dissatisfied (only 1% are very dissatisfied) Men are more satisfied than women (88% versus 76%) Those who are least satisfied are: Aged between 19 and 34 years old (17% dissatisfied) Those that are Disabled (18% dissatisfied, but there are only 28 in this group) Those that are Un-employed due to IBD (17% dissatisfied, but there are only 12 in this group)

15. United we Stand Page 15 Supported by an educational grant from Abbott Country Report: Austria MEDICATION None of the respondents said they are not taking any medication currently, and very few respondents (2.5%) say they do not know what they are taking now. The medicine most likely to be taken at the moment: –33% claim to be taking Aminosalicylates (5-ASA), particularly those with Ulcerative Colitis (51%) –30% claim to be taking drugs that affect the immune system –22% are taking biologic drugs –12% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 41% of participants say they have used steroids in the past year 33% say they are worried about the impact of steroids on their long-term health, with 19-34 year olds being more concerned than the 35-54 age group

16. United we Stand Page 16 Supported by an educational grant from Abbott Country Report: Austria FREQUENCY OF HOSPITALISATION: (Q8) 81% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (44% for 1 – 5 days and 37% for longer than that Those with Crohn’s Disease are most likely to have been hospitalised (85%), but the majority of these (64%) will have spent no more than 1 – 5 days in hospital during the past 5 years On the other hand, 28% of those with Ulcerative Colitis have not been in hospital (compared to only 15% of those with Crohn’s Disease) - but when they are hospitalised it is more likely to be for longer (65% have been hospitalised for 6 days or more in the past 5 years) Women are more likely to have spent no time in hospital (29%) than men (6%).

17. United we Stand Page 17 Supported by an educational grant from Abbott Country Report: Austria OPERATIONS: (Q6 & 7) 53% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 19% have had one operation, 8% have had two operations, and 20% have had 3 or more. It was noticeable that 10% of all respondents have had 5 or more operations. Younger patients are less likely to have had an operation Respondents with Crohn’s are more likely than others to have had at least one operation (68% say that they have) and they are also most likely to have had several operations (39% have had more than one). 9 out of 10 respondents that have had an operation are very or somewhat satisfied with the outcome – and only 2% express dissatisfaction. These findings are broadly similar for both men and women, and across all age ranges.

18. United we Stand Page 18 Supported by an educational grant from Abbott Country Report: Austria AT THE CLINIC (Q17 – 24) 83% say that their clinic has a Specialist Gastroenterologist and 38% say they have a Nurse who understands or specialises in IBD. Most people (75%) feel they do have adequate access to their IBD professional - however: –19% say they do not. –42% feel that at their appointment they didn’t get to tell the specialist something that was important – though 48% said this hardly ever/never happened –61% say they wish that the gastroenterologist had asked more probing questions 23% 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: Austria 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 76% of respondents (rising to 80% for female respondents). This is followed by Family/general physician clinic/service (43%) and Counsellor or psychologist (13% - but higher amongst female respondents). Specialist/gastroenterologist (60%) and Family/general physician clinic/service practitioners (33%) are seen as being best at returning calls promptly, followed by Counsellor or Psychologist (8%).

20. United we Stand Page 20 Supported by an educational grant from Abbott Country Report: Austria AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 73% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 46% say that their family/general physician clinic/service does this. Understanding how IBD impacts on your life (Q24) 68% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, compared to 42% who believe that this applies to the Family/general physician clinic/service practitioner, and 21% who think it is the Counsellor or psychologist.

21. United we Stand Page 21 Supported by an educational grant from Abbott Country Report: Austria

22. United we Stand Page 22 Supported by an educational grant from Abbott Country Report: Austria CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 64% of respondents claimed to be in remission/not flaring (more men than women), whilst 27% had chronically active conditions, and 8% were suffering periodic active flare ups. The fully employed seem more likely to be in remission than those who are unemployed or under- employed due to their IBD.

23. United we Stand Page 23 Supported by an educational grant from Abbott Country Report: Austria EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 43% of the sample claim that their last flare had been over 12 months ago. 8.5% had experienced a flare in the previous month, and a further 8.5% had experienced one between 1 and 3 months ago – so a total of 17% within the last 3 months as a whole.

24. United we Stand Page 24 Supported by an educational grant from Abbott Country Report: Austria NUMBER OF FLARE-UPS EXPERIENCED (Q27) 10% of respondents claimed that their condition was always flaring (15% of women, but only 4% of men), whilst another 20% claimed that they had experienced no flare at all in the past two years. A further 5% claim to have experienced at least 7 episodes in the past two years, whilst 50% have experienced between 1 and 3 episodes.

25. United we Stand Page 25 Supported by an educational grant from Abbott Country Report: Austria COPING WITH IBD FLARE-UPS (Q28) 37% 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, 35% felt that their plans were rarely or never disrupted Women appear slightly 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: Austria 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: Austria INCIDENCE OF BLEEDING (Q29/36)

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

29. United we Stand Page 29 Supported by an educational grant from Abbott Country Report: Austria 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: Austria URGENCY OF BOWEL MOVEMENTS (Q32/39)

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

32. United we Stand Page 32 Supported by an educational grant from Abbott Country Report: Austria OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35) Referring back to their most recent experience, when they are between flares: 67% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD. Conversely, 33% say that their life is affected Women are more likely (42%) than men (22%) to claim that their lives are affected 63% of respondents say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease, and 24% report that it can be necessary

33. United we Stand Page 33 Supported by an educational grant from Abbott Country Report: Austria

34. United we Stand Page 34 Supported by an educational grant from Abbott Country Report: Austria 54% of respondents say they feel stressed or pressured about taking time off work due to IBD (Q43) –this affects those in the 19 – 34 age group in particular (62%) 26% have not had any time off in the past year, due to IBD – but 74% have 24% have had more than 25 days absence While 69% have not made adjustments to their working life to avoid having to take time off, 31% say that they have done this INCIDENCE OF BEING ABSENT FROM WORK

35. United we Stand Page 35 Supported by an educational grant from Abbott Country Report: Austria THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Doctor’s appointment (62%) Hospital/emergency department visit (53%) Fatigue, and/or not enough energy to get through the day (43%) Cramping or painful abdomen (46%) ATTITUDES IN THE WORKPLACE: (Q47/48) 83% say they have not been the victims of complaints or unfair comments about their performance – but 17% report that they have (Q47). Men are slightly more likely to say this, than women, also those with Crohn’s Disease 87% deny that they have suffered from discrimination in the workplace, but 13% say that they have (rising to 33% of those who are unemployed – 4 out of the 12 respondents in this small group) (Q48)

36. United we Stand Page 36 Supported by an educational grant from Abbott Country Report: Austria HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 39% 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). A further 16% said ‘nat applicable, however. For the rest (45% of all respondents) the most prevalent effects of IBD seem to be: 1.Being less motivated (24%) 2.Not participating in social activities at work (23%) 3.Being quiet or quieter during meetings (22%) 4.Being irritable at work (17%)

37. United we Stand Page 37 Supported by an educational grant from Abbott Country Report: Austria HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51) 56% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 29% of respondents feel this very strongly. Those most likely to say they have been disadvantaged are unemployed or under- employed due to IBD, seeking disability or unable to receive disability status (though these are very small groups). Respondents in the 35-54 age group are more inclined to say their prospects have been affected (59%) compared to those aged 19 – 34 (49%) In addition, 36% of respondents say that they have lost or have had to quit a job because of IBD (with higher levels among those who are unemployed or under- employed due to IBD).

38. United we Stand Page 38 Supported by an educational grant from Abbott Country Report: Austria

39. United we Stand Page 39 Supported by an educational grant from Abbott Country Report: Austria INTIMATE RELATIONSHIPS (Q52/53) 31% of all respondents say that their IBD has prevented them from pursuing intimate relationships - men are more likely to say this (35%) than women (28%) On the other hand, 52% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 70% deny that it has caused an intimate relationship to end. MAKING FRIENDS (Q54) The majority of respondents (60%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (28%) say that it has (those who are fully employed, also those in the 35 – 54 age group are less inclined to say this).

40. United we Stand Page 40 Supported by an educational grant from Abbott Country Report: Austria EDUCATION (Q55) 40% of those who took part in the survey feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – rising to 44% among women compared to 36% among men. It is an even more prevalent issue for those who have any form of disability and for people who are under- or unemployed.

41. United we Stand Page 41 Supported by an educational grant from Abbott Country Report: Austria AVAILABILITY OF TOILETS (Q56) This is a very personal and significant problem for people with IBD conditions, and levels of concern tend to increase with age. 16% of respondents claim that other people sometimes joke about their frequent need to go to the toilet In particular: 67% worry about the ready availability of toilets whenever they go somewhere new 62% frequently consider the availability of toilets when they plan to attend something To help them to deal with going out: 30% keep a list of clean, accessible toilets and consider this when they leave home – this is much less of an issue for those who are fully employed. It is an approach that is used by 36% of women compared to 22% of men But the easy location of a toilet does not always resolve the problem: 23% of respondents say they have had to be rude to people at times in order gain access to a toilet – older people and those with a disability are most likely to find this is necessary.

42. United we Stand Page 42 Supported by an educational grant from Abbott Country Report: Austria EFFECTS ON SLEEP (Q56) 29% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women far more than men (39% compared to 16%).

43. United we Stand Page 43 Supported by an educational grant from Abbott Country Report: Austria 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 (39%) said that it made them more optimistic, especially those with Ulcerative Colitis. EFCCA and similar patient associations: (Q58 – 60) 73% of respondents have engaged in some way with EFCCA member associations (with those aged over 35 being most inclined to do so). 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: Austria LEVEL OF INVOLVEMENT WITH A PATIENTS’ ASSOCIATION (Q59) The most likely ways that people are associated with a member association are : 1.Receiving patient information leaflets from their national IBD association (67%) 2.Signing up to be a member of their national IBD association (53%) 3.Subscribing to newsletters or magazines from their national IBD association (53%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (2.5%) Become a leader, or join a committee within their national IBD association (2.5%) Help their national IBD association in fundraising (4.2%) Volunteer to help their national IBD associaton (4.2%) Call a helpline, or email their national IBD association (5.8%)

45. United we Stand Page 45 Supported by an educational grant from Abbott Country Report: Austria 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