1. United we Stand Page 1 Supported by an educational grant from Abbott Country Report: Finland IMPACT 2010-11 Crohn’s and Ulcerative Colitis Patient Life Impact Survey First full results – November 2011 Country Report - Finland

2. United we Stand Page 2 Supported by an educational grant from Abbott Country Report: Finland 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: Finland 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: Finland 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: Finland 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 255 responses were received from respondents in Finland. The most important characteristics of the sample who responded are: Forms of IBD: 40% of respondents have Crohn’s 57% have Ulcerative Colitis Gender: 70% of response was from women 30% of response was from men Age group: Majority of responses (92%) were from 19-44 year olds

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

8. United we Stand Page 8 Supported by an educational grant from Abbott Country Report: Finland 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. Ulcerative Colitis is the most prevalent of the inflammatory bowel conditions affecting respondents to the survey (57% say they have this) Men (59%) are slightly more likely to suffer from Ulcerative Colitis than women (55%) Conversely, female respondents (42%) are slightly more likely to suffer from Crohn’s Disease than men (37%). Older respondents (particularly those aged 55 and above) appear more likely to suffer with Ulcerative Colitis, compared to respondents as a whole.

9. United we Stand Page 9 Supported by an educational grant from Abbott Country Report: Finland IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (163 responses) with 39% having Crohn’s Disease and 57% having Ulcerative Colitis. While the majority of respondents find they are able to hold down a full time job, IBD makes it very difficult for some people to do so – 9 say they are unemployed due to IBD, while 5 say they are under-employed. Among these groups, Ulcerative Colitis is more prevalent than Crohn’s Disease (in a similar proportion to that seen across the response group as a whole). Of the 53 who say they are students, –40% have Crohn’s Disease and –60% have Ulcerative Colitis

10. United we Stand Page 10 Supported by an educational grant from Abbott Country Report: Finland BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 48% of respondents saw a specialist within 6 months of their symptoms starting, 20% did so within 6 months to a year thus, 68% 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: Women seem more likely to see a specialist within a year of their symptoms starting (70% of women do so, compared to 65% of men). Among the group aged 55 and above, 31% say they had to wait longer than a year – but among those who describe themselves as ‘retired’ this falls to 19%

11. United we Stand Page 11 Supported by an educational grant from Abbott Country Report: Finland GETTING A DIAGNOSIS (Q2 & 4) 67% 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 45% had to visit at least twice, and 19% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 52% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: 32% got their diagnosis in less than 6 months For another 20% it took 6 months to 1 year Women (35%) were more likely than men (24%) to be diagnosed within 6 months Patients in the age group 19 - 34 seem most likely to get a speedy diagnosis (36% within 6 months)

12. United we Stand Page 12 Supported by an educational grant from Abbott Country Report: Finland GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 12% of respondents say it took 1 – 2 years to get a diagnosis This increases to 20% for patients who are under-employed due to IBD or are retired Amongst the total sample, 19% had to wait 5 years or more for a diagnosis. 61% of those with Ulcerative Colitis were diagnosed within 1 year, compared to only 42% with Crohn’s Disease

13. United we Stand Page 13 Supported by an educational grant from Abbott Country Report: Finland 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: 55% have used steroids for their condition 55% are concerned about the long-term effects of steroids on their health 50% experience side-effects from steroids 37% have joint involvement associated with IBD 33% keep steroids on hand in case of an IBD flare 27% experience skin involvement associated with IBD 18% regularly use pain pills to relieve their IBD symptoms 12% have complications of surgery such as adhesions, wound infections or pain

14. United we Stand Page 14 Supported by an educational grant from Abbott Country Report: Finland

15. United we Stand Page 15 Supported by an educational grant from Abbott Country Report: Finland SATISFACTION WITH THE TREATMENT PLAN: (Q16) 76% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 13% say that they are either somewhat or very dissatisfied (only 2.4% are very dissatisfied) Men and women’s responses on this point are very similar. Respondents aged between 19 and 34 tend to be less satisfied than other age bands (68% satisfied, but 16% dissatisfied). The groups that are least satisfied are those who are unable to receive disability status, seeking disability, under-employed due to IBD (all of them based on a very small sample but reporting 60%+ dissatisfaction)

16. United we Stand Page 16 Supported by an educational grant from Abbott Country Report: Finland MEDICATION Only 2.5% of respondents are not taking any medication currently. The medicine most likely to be taken at the moment: –71% claim to be taking Aminosalicylates (5-ASA), particularly men (82%) and those with Ulcerative Colitis (83%) or Indeterminate Colitis (86%) –36% claim to be taking drugs that affect the immune system –13% are taking biologic drugs –27% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 50% of participants say they experience side effects from taking steroids– this rises to 52% for women compared to 46% for men 55% say they are worried about the impact of steroids on their long-term health, with women and those aged between 19 and 34 being the most concerned, also those with Ulcerative Colitis

17. United we Stand Page 17 Supported by an educational grant from Abbott Country Report: Finland FREQUENCY OF HOSPITALISATION: (Q8) 82% of respondents have been hospitalised in the past 5 years, because of their IBD symptoms (29% for 1 – 5 days and 53% for longer than that 86% of those with Crohn’s Disease have spent some time in hospital during the past 5 years (compared to 78% of those with Ulcerative Colitis) However, patients with Crohn’s do not tend to stay in hospital for as many days: 60% of those with Ulcerative Colitis and 71% of those with Indeterminate Colitis have spent 6 days or more in hospital in the past 5 years, but this falls to 40% among those with Crohn’s Disease

18. United we Stand Page 18 Supported by an educational grant from Abbott Country Report: Finland OPERATIONS: (Q6 & 7) 74% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 13% have had one operation, 6% have had two operations, and 7% have had 3 or more. 4% of all respondents have had 5 or more operations. 32% of those aged 35 - 54 have had at least one operation (and 19% have had more than that) Students are least likely to say they have had any operations Respondents with Crohn’s are more likely than others to have had at least one operation (44% say that they have) and they are also most likely to have had several operations (23% have had more than one). The majority of people who have had an operation (80%) are very or somewhat satisfied with the outcome – but 12% express dissatisfaction. Men report higher levels of satisfaction (86% compared to 78% for women). Lowest levels of satisfaction are seen among those in the 35 – 54 age group, also those who are fully employed (16% dissatisfaction in both cases).

19. United we Stand Page 19 Supported by an educational grant from Abbott Country Report: Finland AT THE CLINIC (Q17 – 24) 92% say that their clinic has a Specialist Gastroenterologist and 72% say they have a Nurse who understands or specialises in IBD. Most people (67%) feel they do have adequate access to their IBD professional - however: 19% say they do not. 49% feel that at their appointment they didn’t get to tell the specialist something that was important –25% say this happens sometimes, –24% say it happens a lot. 72% say they wish that the gastroenterologist had asked more probing questions –22% say they wish this at least 75% of the time –Those who are disabled, unable to receive disability status or under-employed due to IBD seem to be even less satisfied on this point, than others –Highest levels of satisfaction are seen among the 19 – 54 age groups

20. United we Stand Page 20 Supported by an educational grant from Abbott Country Report: Finland AT THE CLINIC Communicating with healthcare professionals (Q21/22) Nurses are thought to provide the best range of options for patients to get in touch, voted for by 61% of respondents (rising to 68% among those with Crohn’s Disease, while the small group of respondents aged 18 or younger gave a 100% vote to the Nurses. This is followed by Specialist/gastroenterologist’s service (52%). It is particularly valued by those aged 35 and over (rising to 69% satisfaction among those aged 55 and more) Nurses (56%) and Specialist/gastroenterologist service (45%) are seen as being best at returning calls promptly,

21. United we Stand Page 21 Supported by an educational grant from Abbott Country Report: Finland AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 51% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 46% say that their Nurse does this. Understanding how IBD impacts on your life (Q24) 57% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, compared to 37% who believe that this applies to the Nurses.

22. United we Stand Page 22 Supported by an educational grant from Abbott Country Report: Finland

23. United we Stand Page 23 Supported by an educational grant from Abbott Country Report: Finland CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 53% of respondents claimed to be in remission/not flaring (rising to 57% of the men, compared to 51% of the women), whilst 24% had chronically active conditions, and 21% were suffering periodic active flare ups. 55% of those who are fully employed and 49% of students say they are in remission/not flaring, also 58% of those with Ulcerative Colitis (compared to only 45% with Crohn’s Disease) Amongst the small groups who are under- or unemployed due to IBD, only about 1 in 5 (20-22%) claim to be in remission, and this falls to 14% among those seeking disability, and 19% among the retired (both of these groups are also quite small).

24. United we Stand Page 24 Supported by an educational grant from Abbott Country Report: Finland EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 33% of the sample claim that their last flare had been over 12 months ago. By contrast, 15% had experienced a flare in the previous month, and a further 16% had experienced one between 1 and 3 months ago – so a total of 31% within the last 3 months as a whole. There was little difference between the genders on this point.

25. United we Stand Page 25 Supported by an educational grant from Abbott Country Report: Finland NUMBER OF FLARE-UPS EXPERIENCED (Q27) 14% of respondents claimed that their condition was always flaring (16% of women, compared to 9% of men), whilst another 14% claimed that they had experienced no flare at all in the past two years. A further 7% claim to have experienced at least 7 episodes in the past two years, whilst 46% have experienced between 1 and 3 episodes. Those claiming that their condition is always flaring are most likely to be in the group that is seeking disability (86%) – NB this is a small group. Chronic flaring is also more likely amongst those who are under-employed due to IBD, those who are unable to receive disability status and the retired.

26. United we Stand Page 26 Supported by an educational grant from Abbott Country Report: Finland COPING WITH IBD FLARE-UPS (Q28) 38% claimed that during their most recent flare up, they hardly ever needed to cancel or re- schedule an engagement because of their IBD However, 34% said it was a regular problem (and 20% said it was necessary most or all of the time) The 55+ age group were most likely to have plans disrupted, along with those who are retired or disabled.

27. United we Stand Page 27 Supported by an educational grant from Abbott Country Report: Finland FREQUENCY OF IBD-RELATED SYMPTOMS NB. As can be seen in the following three tables, for many people there is 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.

28. United we Stand Page 28 Supported by an educational grant from Abbott Country Report: Finland INCIDENCE OF BLEEDING (Q29/36)

29. United we Stand Page 29 Supported by an educational grant from Abbott Country Report: Finland INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

30. United we Stand Page 30 Supported by an educational grant from Abbott Country Report: Finland INCIDENCE OF FEELING TIRED, WEAK, OR WORN OUT (Q31/38)

31. United we Stand Page 31 Supported by an educational grant from Abbott Country Report: Finland URGENCY OF BOWEL MOVEMENTS (Q32/39)

32. United we Stand Page 32 Supported by an educational grant from Abbott Country Report: Finland FREQUENCY OF RUNNY STOOLS/ EPISODES OF DIARRHOEA (Q33/40)

33. United we Stand Page 33 Supported by an educational grant from Abbott Country Report: Finland 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 – but 13% say that their life is significantly affected - More numerous incidences are reported by those who are seeking disability and those who are disabled Almost three quarters of respondents (73%) say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 20% report that it can be necessary – particularly those who are unable to receive disability status)

34. United we Stand Page 34 Supported by an educational grant from Abbott Country Report: Finland

35. United we Stand Page 35 Supported by an educational grant from Abbott Country Report: Finland 61% of respondents say they feel stressed or pressured about taking time off work due to IBD – all groups of respondents are similarly affected, apart from those who are retired or who are aged 18 years or less (Q43) 33% have not had any time off in the past year, due to IBD – but 77% have 14% have had more than 25 days absence (especially those with Indeterminate Colitis) (Q45) While 66% have not made adjustments to their working life to avoid having to take time off, 34% say that they have done this –NB 40% of those who are now under-employed and those who are unable to receive disability status, have opted to go part-time (Q44). INCIDENCE OF BEING ABSENT FROM WORK

36. United we Stand Page 36 Supported by an educational grant from Abbott Country Report: Finland THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Doctor’s appointment (55%) Hospital/emergency department visit (38%) Fatigue, and/or not enough energy to get through the day (36%) Cramping or painful abdomen (35%) ATTITUDES IN THE WORKPLACE: (Q47/48) 84% say they have not been the victims of complaints or unfair comments about their performance – but 16% report that they have (Q47). Those who are seeking disability (80%) and those unable to receive disability are most likely to say that this has happened. 85% deny that they have suffered from discrimination in the workplace, but 15% say that they have (rising to 60% of those who are unable to receive disability status and 56% among those who ar unemployed due to IBD) (Q48)

37. United we Stand Page 37 Supported by an educational grant from Abbott Country Report: Finland HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): 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). For the rest (61%) the most prevalent effects of IBD seem to be: 1.Being less motivated (31%) 2.Not participating in social activities at work (28%) 3.Being quiet or quieter during meetings (17%) 4.Being irritable at work (17%)

38. United we Stand Page 38 Supported by an educational grant from Abbott Country Report: Finland HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 45% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 18% of respondents feel this very strongly. Those most likely to say they have been disadvantaged are: 1.Unemployed due to IBD (100%) or under-employed (80%) 2.Disabled (100%), unable to receive disability status (100%) or seeking disability (83%) 3.Retired (75%) 4.Men (52%) In addition, 22% of respondents say that they have lost or have had to quit a job because of IBD (rising to 100% among those who are unemployed due to IBD, those who are disabled, and those who are unable to receive disability status).

39. United we Stand Page 39 Supported by an educational grant from Abbott Country Report: Finland

40. United we Stand Page 40 Supported by an educational grant from Abbott Country Report: Finland INTIMATE RELATIONSHIPS (Q52/53) 33% of all respondents say that their IBD has prevented them from pursuing intimate relationships (41% of men compared to 29% of women). Least affected are students and those who are retired. On the other hand, 51% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 76% deny that it has caused an intimate relationship to end. MAKING FRIENDS (Q54) The majority of respondents (66%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (22%) say that it has (30% of men compared to 19% of women).

41. United we Stand Page 41 Supported by an educational grant from Abbott Country Report: Finland EDUCATION (Q55) Just under half of those who took part in the survey (48%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – with those under 35 being more affected than others It is an even more prevalent issue for those who have any form of disability and for people who are under- or unemployed.

42. United we Stand Page 42 Supported by an educational grant from Abbott Country Report: Finland 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. 29% of respondents claim that other people sometimes joke about their frequent need to go to the toilet which probably reflects a lack of understanding of the problems of IBD conditions (rather than insensitivity) In particular, nearly 2 out of 3 respondents (61 - 63%) say that they: Worry about the ready availability of toilets whenever they go somewhere new Frequently consider the availability of toilets when they plan to attend something To help them to deal with going out, 24% keep a list of clean, accessible toilets and consider this when they leave home – this is an approach that is used by disabled respondents, in particular. But the easy location of a toilet does not always resolve the problem: 14% of respondents say they have had to be rude to people at times in order gain access to a toilet – it seems to affect those with a disability far more than others.

43. United we Stand Page 43 Supported by an educational grant from Abbott Country Report: Finland EFFECTS ON SLEEP (Q56) 29% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women (31%) more than men (24%), and those who are unemployed or under-employed far more than those who are working full time. Those with Ulcerative Colitis are slightly less inclined to have broken sleep compared to those with Crohn’s Disease (and far less than those with Indeterminate Colitis).

44. United we Stand Page 44 Supported by an educational grant from Abbott Country Report: Finland 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 almost half of them (47%), but a similar number (45%) said that it made them more optimistic, particularly those aged 18 or less and those who are 55 or more, respondents who are underemployed due to IBD and those who are seeking disability. A small proportion (8%) were made more pessimistic, and this rises to 53% among those who are retired. EFCCA and similar patient associations: (Q58 – 60) 70% of respondents have engaged in some way with EFCCA member associations. The groups that are least likely to be engaged are the students and those aged 19 – 34 and, although a reasonably healthy level of engagement is reported, we recommend that work is done to improve awareness within these groups. Importantly, 68% 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.

45. United we Stand Page 45 Supported by an educational grant from Abbott Country Report: Finland LEVEL OF INVOLVEMENT WITH A PATIENTS’ ASSOCIATION The most likely ways that people are associated with a member association are : 1.Signing up to be a member of their national IBD association (62%) 2.Receiving patient information leaflets from their national IBD association (57%) 3.Subscribing to newsletters or magazines from their national IBD association (35%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (0.8%) Help their national IBD association in fundraising (1.6%) Become a leader, or join a committee within their national IBD association (2.4%)

46. United we Stand Page 46 Supported by an educational grant from Abbott Country Report: Finland 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