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

2. United we Stand Page 2 Supported by an educational grant from Abbott Country Report – Norway 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 – Norway 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 – Norway 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 – Norway 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 175 responses were received from IBD patients in Norway. The most important characteristics of the sample who responded are: Forms of IBD: 50% of respondents have Crohn’s 48% have Ulcerative Colitis Gender: 72% of response was from women 28% of response was from men Age group: Majority of responses (85%) were from 19-54 year olds

6. United we Stand Page 6 Supported by an educational grant from Abbott Country Report – Norway 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 – Norway

8. United we Stand Page 8 Supported by an educational grant from Abbott Country Report – Norway 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 and Ulcerative Colitis are jointly the most prevalent of the inflammatory bowel conditions affecting respondents to the survey (50% & 48% respectively) Women (52%) are slightly more likely to suffer from Crohn’s than men (45%) Conversely, male respondents (55%) are slightly more likely to suffer from Ulcerative Colitis than women (45%).

9. United we Stand Page 9 Supported by an educational grant from Abbott Country Report – Norway IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (69 responses, or 39% of the total) with 43% of these having Crohn’s Disease and 55% 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 many people to do so and: Of the 28 who say they are under-employed due to IBD, –64% have Crohn’s Disease and –36% have Ulcerative Colitis Of the 16 who say they are un-employed due to IBD, –44% have Crohn’s Disease and –50% have Ulcerative Colitis

10. United we Stand Page 10 Supported by an educational grant from Abbott Country Report – Norway BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 43% of respondents saw a specialist within 6 months of their symptoms starting, 24% did so within 6 months to a year thus, 67% of all respondents saw a specialist within the first year of their illness There are some differences between the genders on this: The process tends to take slightly longer on average for women, and men seem more likely to see a specialist within a year of their symptoms starting. This applies to 76% of men, but only 62% of women.

11. United we Stand Page 11 Supported by an educational grant from Abbott Country Report – Norway GETTING A DIAGNOSIS (Q2 & 4) 85% 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 54% had to visit at least twice or more, and 21% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 48% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: –28% got their diagnosis in less than 6 months –For another 20% it took 6 months to 1 year

12. United we Stand Page 12 Supported by an educational grant from Abbott Country Report – Norway GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 12% of respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 22% had to wait 5 years or more for a diagnosis. Crohn’s Disease takes longer that Ulcerative Colitis to be diagnosed (32% vs. 64% in terms of being diagnosed within a year)

13. United we Stand Page 13 Supported by an educational grant from Abbott Country Report – Norway 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% are concerned about the long-term effects of steroids on their health 65% experience side-effects from steroids 58% have used steroids for their condition 49% have joint involvement associated with IBD 38% keep steroids on hand in case of an IBD flare 36% experience skin involvement associated with IBD 29% regularly use pain pills to relieve their IBD symptoms 18% 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 – Norway

15. United we Stand Page 15 Supported by an educational grant from Abbott Country Report – Norway SATISFACTION WITH THE TREATMENT PLAN: (Q16) 59% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 21% say that they are either somewhat or very dissatisfied (9% are very dissatisfied) Women are slightly more satisfied than men (60% versus 57%) Those who are least satisfied are: Respondents who are aged between 19 – 34 (25% dissatisfied)

16. United we Stand Page 16 Supported by an educational grant from Abbott Country Report – Norway MEDICATION 16% of respondents are not taking any medication currently, and very few respondents (2%) say they do not know what they are taking now. The medicine most likely to be taken at the moment: –47% claim to be taking Aminosalicylates (5-ASA), particularly men (51%) and those with Ulcerative Colitis (77%) –23% are taking biologic drugs –23% are taking corticosteroids –22% claim to be taking drugs that affect the immune system Using steroids, specifically: (Q5 & 10) 65% of participants say they experience side effects from taking steroids– this rises to 68% for women compared to 57% for men 67% say they are worried about the impact of steroids on their long-term health, with women being more concerned than men. Respondents with Crohn’s Disease are more likely to experience side effects (71%)

17. United we Stand Page 17 Supported by an educational grant from Abbott Country Report – Norway FREQUENCY OF HOSPITALISATION: (Q8) 76% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (34% for 1 – 5 days and 42% for longer than that) Those with Crohn’s Disease are most likely to have been hospitalised (85%), but the majority of these (57%) will have spent no more than 1 – 5 days in hospital during the past 5 years On the other hand, 32% of those with Ulcerative Colitis have not been in hospital (compared to only 14% of those with Crohn’s Disease) - but when they are hospitalised it is more likely to be for longer (56% have been hospitalised for 6 days or more in the past 5 years)

18. United we Stand Page 18 Supported by an educational grant from Abbott Country Report – Norway OPERATIONS: (Q6 & 7) 63% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 10% have had one operation, 9% have had two operations, and 18% have had 3 or more. It was noticeable that 7% of all respondents have had 5 or more operations. Younger patients are least likely to have had an operation 50% of those aged 55 or more have had at least one (and 39% have had more than one) People whose ability to work has been affected by their condition are more likely to have had at least one operation, compared to those in full employment (where 70% have NOT had an operation) Respondents with Crohn’s are more likely than others to have had at least one operation (61% say that they have) and they are also most likely to have had several operations (43% have had more than one). The majority of people who have had an operation (65%) are very or somewhat satisfied with the outcome – but 16% express dissatisfaction. These findings are broadly similar for both men and women, and across all age ranges. Lowest levels of satisfaction are seen among those with Ulcerative Colitis and respondents aged between 19 and 34.

19. United we Stand Page 19 Supported by an educational grant from Abbott Country Report – Norway AT THE CLINIC (Q17 – 24) 86% say that their clinic has a Specialist Gastroenterologist and 47% say they have a Nurse who understands or specialises in IBD. Male respondents are more likely than others to say their clinic has a counsellor or psychologist. Most people (53%) feel they do have adequate access to their IBD professional – however 31% say they do not. 59% feel that at their appointment they didn’t get to tell the specialist something that was important –20% say this happens sometimes, –39% say it happens a lot. 70% say they wish that the gastroenterologist had asked more probing questions –35% say they wish this at least 75% of the time

20. United we Stand Page 20 Supported by an educational grant from Abbott Country Report – Norway 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 54% of respondents (rising to 64% for respondents with Crohn’s disease). This is followed by Family/general physician clinic/service (43% - but higher amongst female respondents) and Nurse (15%). Specialist/gastroenterologist (42%) and Family/general physician clinic/service practitioners (35%) are seen as being best at returning calls promptly, followed by Nurses (14%).

21. United we Stand Page 21 Supported by an educational grant from Abbott Country Report – Norway AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 50% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, 36% say that their family/general physician clinic/service does this and 22% say the Nurse (Males are more inclined to say that Nurses do this – 31%). Understanding how IBD impacts on your life (Q24) 51% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, compared to 30% who believe that this applies to the Family/general physician clinic/service practitioner, and 21% who think it is the Nurses. Men (more than women) are less inclined towards thinking that the Family/general physician clinic/service practitioner (18%) understand the impact better, with Specialist/Gastroenterologists (59%) and Nurses (31%) understanding the impact the best.

22. United we Stand Page 22 Supported by an educational grant from Abbott Country Report – Norway

23. United we Stand Page 23 Supported by an educational grant from Abbott Country Report – Norway CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 41% of respondents claimed to be in remission/not flaring (slightly more women than men), whilst 26% had chronically active conditions, and 30% were suffering periodic active flare ups. The fully employed group is more likely than other groups to be in remission (49%).

24. United we Stand Page 24 Supported by an educational grant from Abbott Country Report – Norway EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 22% of the Norwegian sample claim that their last flare had been over 12 months ago. By contrast, 30% 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 46% within the last 3 months as a whole.

25. United we Stand Page 25 Supported by an educational grant from Abbott Country Report – Norway NUMBER OF FLARE-UPS EXPERIENCED (Q27) 20% of respondents claimed that their condition was always flaring (21% of women, and 17% of men), whilst another 13% claimed that they had experienced no flare at all in the past two years. A further 13% claim to have experienced at least 7 episodes in the past two years, whilst 30% have experienced between 1 and 3 episodes. Those claiming that their condition is always flaring are most likely to be in the 19-34 year age group, and they also seem more likely to be unemployed (44%) due to their IBD – though this is based on a small sub sample of only 16 respondents

26. United we Stand Page 26 Supported by an educational grant from Abbott Country Report – Norway COPING WITH IBD FLARE-UPS (Q28) 47% claimed that during their most recent flare up, they were somewhat more likely than not to cancel or reschedule an engagement or meeting because of their symptoms. At the other end of the scale, only 24% felt that their plans were not really disrupted. The fully employed seem far less likely to have to cancel or reschedule appointments because of their symptoms. Women appear more likely than men to have planned events disrupted by their condition - this applies to 51% of them at least half of the time, compared to 36% for men on the same basis.

27. United we Stand Page 27 Supported by an educational grant from Abbott Country Report – Norway 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.

28. United we Stand Page 28 Supported by an educational grant from Abbott Country Report – Norway INCIDENCE OF BLEEDING (Q29/36) * Most sub groups are too small to make meaningful comparisons

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

30. United we Stand Page 30 Supported by an educational grant from Abbott Country Report – Norway 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 – Norway URGENCY OF BOWEL MOVEMENTS (Q32/39) * Most sub groups are too small to make meaningful comparisons.

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

33. United we Stand Page 33 Supported by an educational grant from Abbott Country Report – Norway OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35) Referring back to their most recent experience, when they are between flares: 42% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but more (58%) say that their life is affected, and 31% claim that it is significantly affected 60% of all women respondents claim that their lives are affected Fewer (35%) of the fully employed claim that their lives are affected Whilst more than half of respondents (54%) say they hardly ever have to cancel or reschedule an engagement or meeting because of their IBD, 40% report that it can be necessary.

34. United we Stand Page 34 Supported by an educational grant from Abbott Country Report – Norway

35. United we Stand Page 35 Supported by an educational grant from Abbott Country Report – Norway 70% of respondents say they feel stressed or pressured about taking time off work due to IBD – however, slightly fewer of those who are fully employed (62%) say this(Q43) 23% have not had any time off in the past year, due to IBD – but 77% have. 27% of respondents with Ulcerative Colitis have not had to be absent, but this drops to 20% among Crohn’s patients. 36% have had more than 25 days absence (higher still for those who are under- or unemployed, and those with a disability) (Q45) While 48% have not made adjustments to their working life to avoid having to take time off, 52% say that they have done this –54% of those who are now under-employed have opted to go part-time (Q44) –Women are more likely to opt to work part time (28% compared to only 9% among male respondents) – however, men are more likely to have moved on to flexible hours (21% say this compared to 11% of female respondents) INCIDENCE OF BEING ABSENT FROM WORK

36. United we Stand Page 36 Supported by an educational grant from Abbott Country Report – Norway THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Fatigue, and/or not enough energy to get through the day (66%) Cramping or painful abdomen (54%) – affects women even more than men, also students and those who are disabled Doctor’s appointment (46%) Hospital/emergency department visit (42%) – 51% of men say this, compared to 39% of women Fear of toilet frequency interfering with work activities (31%) ATTITUDES IN THE WORKPLACE: (Q47/48) 78% say they have not been the victims of complaints or unfair comments about their performance – but 22% report that they have (Q47). Those who are unemployed or under-employed due to IBD and those who are seeking disability are most likely to say that this has happened. 82% deny that they have suffered from discrimination in the workplace, but 18% say that they have (again, this seems to be more of an issue for those who are unemployed, under-employed, or disabled) (Q48)

37. United we Stand Page 37 Supported by an educational grant from Abbott Country Report – Norway HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 26% 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 (74%) the most prevalent effects of IBD seem to be: 1.Being less motivated (35%) 2.Not participating in social activities at work (26%) – this rises to 37% among male respondents 3.Being quiet or quieter during meetings (23%)

38. United we Stand Page 38 Supported by an educational grant from Abbott Country Report – Norway HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 67% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 44% of respondents feel this very strongly. In addition, 49% of respondents say that they have lost or have had to quit a job because of IBD – rising to 52% of women compared to 40% of men. Respondents who are under- or unemployed due to IBD and those who are retired or disabled are more likely than other groups to say they have lost or quite a job due to IBD.

39. United we Stand Page 39 Supported by an educational grant from Abbott Country Report – Norway

40. United we Stand Page 40 Supported by an educational grant from Abbott Country Report – Norway INTIMATE RELATIONSHIPS (Q52/53) 35% of all respondents say that their IBD has prevented them from pursuing intimate relationships - rising to 63% among those who are under-employed due to IBD and 59% among those who are disabled. The problem seems to have affected those with Crohn’s Disease (40%) more than people with Ulcerative Colitis (29%). On the other hand, 46% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 72% deny that it has caused an intimate relationship to end. MAKING FRIENDS (Q54) The majority of respondents (53%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (31%) say that it has (unemployed respondents are more inclined to say this, also respondents with Crohn’s Disease).

41. United we Stand Page 41 Supported by an educational grant from Abbott Country Report – Norway EDUCATION (Q55) Just over half of those who took part in the survey (53%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – rising to 59% among men. It is an even more prevalent issue for those aged under 35, also respondents who are unemployed, and the student group 57% of respondents with Crohn’s disease feel that they have been affected, compared to 48% of those with Ulcerative Colitis

42. United we Stand Page 42 Supported by an educational grant from Abbott Country Report – Norway AVAILABILITY OF TOILETS (Q56) This is a significant problem for people with IBD conditions, and levels of concern tend to increase with age. 19% of respondents claim that other people sometimes joke about their frequent need to go to the toilet In particular: 72% frequently consider the availability of toilets when they plan to attend something 59% worry about the ready availability of toilets whenever they go somewhere new To help them to deal with going out, 27% keep a list of clean, accessible toilets and consider this when they leave home – this is an approach that is less likely to be used by those who are fully employed But the easy location of a toilet does not always resolve the problem: 25% of respondents say they have had to be rude to people at times in order gain access to a toilet – again, this is much less of an issue for those who are fully employed

43. United we Stand Page 43 Supported by an educational grant from Abbott Country Report – Norway EFFECTS ON SLEEP (Q56) 47% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women even more than men (53% compared to 33%) and those who are under- or unemployed due to IBD (more than those who are working full time).

44. United we Stand Page 44 Supported by an educational grant from Abbott Country Report – Norway 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 (44%) said that it made them more optimistic, rising to 53% among those aged 19 – 34, 59% among Students and 56% among respondents who are disabled. EFCCA and similar patient associations: (Q58 – 60) 59% of respondents have engaged in some way with EFCCA member associations (with men and those who are disabled being most inclined to do so). Importantly, 63% 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. Men, in particular say this (75%), also respondents who are disabled, students or who are under-employed due to IBD.

45. United we Stand Page 45 Supported by an educational grant from Abbott Country Report – Norway 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 (50%) 2.Receiving patient information leaflets from their national IBD association (39%) 3.Subscribing to newsletters or magazines from their national IBD association (38%) 4.Attending local or national patient meetings (33%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (2.3%) Help their national IBD association in fundraising (3%)

46. United we Stand Page 46 Supported by an educational grant from Abbott Country Report – Norway 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