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

2. United we Stand Page 2 Supported by an educational grant from Abbott Country Report - Portugal 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 - Portugal 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 - Portugal 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 - Portugal 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 160 responses were received from IBD patients in Portugal. The most important characteristics of the sample who responded are: Forms of IBD: 69% of respondents have Crohn’s 29% have Ulcerative Colitis Gender: 63% of response was from women 37% of response was from men Age group: Majority of responses (89%) were from 19-54 year olds

6. United we Stand Page 6 Supported by an educational grant from Abbott Country Report - Portugal 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 - Portugal

8. United we Stand Page 8 Supported by an educational grant from Abbott Country Report - Portugal 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 (69% say they have this) Women (64%) are slightly less likely to suffer from Crohn’s than men (78%) Conversely, women are more likely to suffer from Ulcerative Colitis (33%) than men (22%)

9. United we Stand Page 9 Supported by an educational grant from Abbott Country Report - Portugal IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (104 responses, 65% of the total) with 66% of these having Crohn’s Disease and 31% having Ulcerative Colitis. Of the 30 respondents who claim to be Students, –67% have Crohn’s Disease and –33% have Ulcerative Colitis –All other employment status groups are too small for any meaningful anaysis (only 2-6 respondents per group only)

10. United we Stand Page 10 Supported by an educational grant from Abbott Country Report - Portugal BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 55% of respondents saw a specialist within 6 months of their symptoms starting, 20% did so within 6 months to a year thus, 75% of all respondents saw a specialist within the first year of their illness

11. United we Stand Page 11 Supported by an educational grant from Abbott Country Report - Portugal GETTING A DIAGNOSIS (Q2 & 4) 83% 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 63% had to visit at least twice or more, and 33% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 58% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: 35% got their diagnosis in less than 6 months For another 23% it took 6 months to 1 year Women (37%) were slightly more likely than men (31%) to be diagnosed within 6 months

12. United we Stand Page 12 Supported by an educational grant from Abbott Country Report - Portugal GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 12% of respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 15% had to wait 5 years or more for a diagnosis. 76% of people with Ulcerative Colitis received their diagnosis within a year, and 59% were diagnosed within 6 months Rather fewer (53%) of those with Crohn’s Disease were diagnosed within a year, and only 26% received a diagnosis within 6 months

13. United we Stand Page 13 Supported by an educational grant from Abbott Country Report - Portugal 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: 50% have used steroids for their condition 44% have joint involvement associated with IBD 38% are concerned about the long-term effects of steroids on their health 28% regularly use pain pills to relieve their IBD symptoms 24% experience skin involvement associated with IBD 24% experience side-effects from steroids 21% keep steroids on hand in case of an IBD flare 9% 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 - Portugal

15. United we Stand Page 15 Supported by an educational grant from Abbott Country Report - Portugal SATISFACTION WITH THE TREATMENT PLAN: (Q16) 77% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 9% say that they are either somewhat or very dissatisfied (only 2% are very dissatisfied) Men are slightly more satisfied than women (83% versus 74%) Those who are least satisfied are the group of respondents with Ulcerative colitis.

16. United we Stand Page 16 Supported by an educational grant from Abbott Country Report - Portugal MEDICATION 14% of respondents are not taking any medication currently (Q15), and very few respondents (4%) say they do not know what they are taking now (Q14). The medicine most likely to be taken at the moment: –64% claim to be taking Aminosalicylates (5-ASA) –24% are taking biologic drugs –38% claim to be taking drugs that affect the immune system –18% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 24% of participants say they experience side effects from taking steroids 38% say they are worried about the impact of steroids on their long-term health, with men being more concerned than women. Side effects and concerns about long-term effects of steroids are reported by a higher proportion of those with Ulcerative Colitis, compared with those who suffer from Crohn’s Disease

17. United we Stand Page 17 Supported by an educational grant from Abbott Country Report - Portugal FREQUENCY OF HOSPITALISATION: (Q8) 87% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (34% for 1 – 5 days and 52% for longer than that). Women (45%) are more likely than men (39%) to have been hospitalised for more than 5 days Average term of hospitalisation is longer for those with ulcerative colitis: 80% of this group have been hospitalised for 6 – 10 days, compared to only 39% of those with Crohn’s.

18. United we Stand Page 18 Supported by an educational grant from Abbott Country Report - Portugal OPERATIONS: (Q6 & 7) 64% of respondents have not had a surgical operation to treat their IBD or IBD- related problems. However, 13% have had one operation, 9% have had two operations, and 14% have had 3 or more. It was noticeable that 5% of all respondents have had 5 or more operations. Those who are fully employed or who are students are least likely to have had an operation Respondents with Crohn’s are more likely than others to have had at least one operation (50% say that they have) and they are also most likely to have had several operations (31% have had more than one). 74% of people who have had an operation (82 respondents) are very or somewhat satisfied with the outcome –12% express dissatisfaction. Men are more satisfied than women with the outcome of their operation(s) (91% compared to 63%), and 20% of women are dissatisfied.

19. United we Stand Page 19 Supported by an educational grant from Abbott Country Report - Portugal AT THE CLINIC (Q17 – 24) 94% say that their clinic has a Specialist Gastroenterologist 31% say they have a Nurse who understands or specialises in IBD 24% have a Family/general physician clinic/service or internal medicine doctor. Most people (78%) feel they do have adequate access to their IBD professional - however: 19% say they do not. 52% feel that at their appointment they didn’t get to tell the specialist something that was important –24% say this happens sometimes, –28% say it happens a lot. 59% say they wish that the gastroenterologist had asked more probing questions –27% 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 - Portugal 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 81% of respondents. This is followed by Family/general physician clinic/service (18%). Specialist/gastroenterologist (73%) and Family/general physician clinic/service practitioners (15%) are also seen as being best at returning calls promptly.

21. United we Stand Page 21 Supported by an educational grant from Abbott Country Report - Portugal AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 74% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 17% say that their family/general physician clinic/service does this. Understanding how IBD impacts on your life (Q24) 69% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, while 16% believe that this applies to the Family/general physician clinic/service practitioner, and 16% who think it is the Nurses.

22. United we Stand Page 22 Supported by an educational grant from Abbott Country Report - Portugal

23. United we Stand Page 23 Supported by an educational grant from Abbott Country Report - Portugal CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 48% of respondents claimed to be in remission/not flaring (slightly more men than women), whilst 21% had chronically active conditions, and 28% were suffering periodic active flare ups. Men (55%) were more likely than women (44%) to be in remission at the time of completing the survey.

24. United we Stand Page 24 Supported by an educational grant from Abbott Country Report - Portugal EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 31% of the sample claim that their last flare had been over 12 months ago. By contrast, 16% had experienced a flare in the previous month, and a further 18% had experienced one between 1 and 3 months ago – so a total of 34% within the last 3 months as a whole. Women seem more likely (38%) to have experienced a flare in the past 3 months than men (where it applies to 27%)

25. United we Stand Page 25 Supported by an educational grant from Abbott Country Report - Portugal NUMBER OF FLARE-UPS EXPERIENCED (Q27) 9% of respondents claimed that their condition was always flaring, whilst 15% 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 59% have experienced between 1 and 4 episodes. Chronic flaring is least likely amongst the fully employed (5% compared to 9% for all respondents). It is also less likely amongst those with ulcerative colitis (4%) than those with Crohn’s (10%).

26. United we Stand Page 26 Supported by an educational grant from Abbott Country Report - Portugal COPING WITH IBD FLARE-UPS (Q28) 55% 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, 26% felt that their plans were not really disrupted.

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

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

30. United we Stand Page 30 Supported by an educational grant from Abbott Country Report - Portugal 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 - Portugal URGENCY OF BOWEL MOVEMENTS (Q32/39)

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

33. United we Stand Page 33 Supported by an educational grant from Abbott Country Report - Portugal OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35) Referring back to their most recent experience, when they are between flares: 52% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but 48% say that their life is affected (rising to 51% of men) 26% of all respondents say that their life is significantly affected (32% of 19-34 year olds) Amongst the fully employed, there is a smaller, but still highly significant number (44%) who say their lives are adversely affected by their IBD 61% say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 30% report that it can be necessary)

34. United we Stand Page 34 Supported by an educational grant from Abbott Country Report - Portugal

35. United we Stand Page 35 Supported by an educational grant from Abbott Country Report - Portugal 59% of respondents say they feel stressed or pressured about taking time off work due to IBD (Q43) 25% have not had any time off in the past year, due to IBD – but 75% have 21% have had more than 25 days absence (rising to 27% among those in the 35 – 54 years age group – compared to 16% among those aged 19 – 34 (Q45) While 70% have not made adjustments to their working life to avoid having to take time off, 30% say that they have done this –33% of women have made adjustments, compared to 26% of men (Q44) –36% of respondents aged 19 – 34 have made adjustments, compared to 29% of those aged 35 - 54 INCIDENCE OF BEING ABSENT FROM WORK

36. United we Stand Page 36 Supported by an educational grant from Abbott Country Report - Portugal THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Doctor’s appointment (69%) Hospital/emergency department visit (54%) Fatigue, and/or not enough energy to get through the day (43%) Cramping or painful abdomen (34%) ATTITUDES IN THE WORKPLACE: (Q47/48) 76% say they have not been the victims of complaints or unfair comments about their performance – but 24% report that they have (Q47). 81% deny that they have suffered from discrimination in the workplace, but 19% say that they have (Q48)

37. United we Stand Page 37 Supported by an educational grant from Abbott Country Report - Portugal HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 29% 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 – it applies to 39% of this group). For the rest the most prevalent effects of IBD seem to be: 1.Being less motivated (35%) 2.Being irritable at work (26%) 3.Being quiet or quieter during meetings (23%) 4.Not participating in social activities at work (21%)

38. United we Stand Page 38 Supported by an educational grant from Abbott Country Report - Portugal HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51) 49% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 27% of respondents feel this very strongly. In addition, 31% of respondents say that they have lost or have had to quit a job because of IBD - women (35%) are more likely to have been affected, than men (26%), and respondents with Crohn’s Disease (35%) more than those with Ulcerative Colitis (17%)

39. United we Stand Page 39 Supported by an educational grant from Abbott Country Report - Portugal

40. United we Stand Page 40 Supported by an educational grant from Abbott Country Report - Portugal INTIMATE RELATIONSHIPS (Q52/53) 45% of all respondents say that their IBD has prevented them from pursuing intimate relationships –49% of women say this, compared to 36% of men –Respondents with Crohn’s Disease (47%) are more likely to say this than those with Ulcerative Colitis (37%) On the other hand, 46% have not found their IBD has been an impediment in the pursuit of intimate relationships 66% deny that it has caused an intimate relationship to end – but 22% say that it has (27% of women say this, compared to 15% of men) MAKING FRIENDS (Q54) The majority of respondents (63%) 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 (rising to 31% among men, compared to only 17% of female respondents). Respondents who are fully employed are less inclined to say that their condition has got in the way of them making friends

41. United we Stand Page 41 Supported by an educational grant from Abbott Country Report - Portugal EDUCATION (Q55) 46% 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 50% among women compared to 40% of men. 51% of respondents in the 19-34 age group (say they have been affected, compared to 37% of those aged 35 - 54

42. United we Stand Page 42 Supported by an educational grant from Abbott Country Report - Portugal AVAILABILITY OF TOILETS (Q56) 36% of respondents claim that other people sometimes joke about their frequent need to go to the toilet In particular: 53% worry about the ready availability of toilets whenever they go somewhere new 56% frequently consider the availability of toilets when they plan to attend something 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: 11% of respondents say they have had to be rude to people at times in order gain access to a toilet

43. United we Stand Page 43 Supported by an educational grant from Abbott Country Report - Portugal EFFECTS ON SLEEP (Q56) 31% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women more than men (35% compared to 23%).

44. United we Stand Page 44 Supported by an educational grant from Abbott Country Report - Portugal 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, particularly people aged under 35. EFCCA and similar patient associations: (Q58 – 60) 43% of respondents have engaged in some way with EFCCA member associations. However, 58% have not done so – those aged under 35 are least likely to have done so. Importantly, 82% 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 (with women being even more positive on this point, than men.

45. United we Stand Page 45 Supported by an educational grant from Abbott Country Report - Portugal 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 (36%) 2.Receiving patient information leaflets from their national IBD association (31%) 3.Attending local or national patient meetings (26%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (3.8%) Help their national IBD association in fundraising (4.4%) Become a leader, or join a committee within their national IBD association (4.4%)

46. United we Stand Page 46 Supported by an educational grant from Abbott Country Report - Portugal 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