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

United we Stand Page 2 Supported by an educational grant from Abbott Country Report – Spain 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

United we Stand Page 3 Supported by an educational grant from Abbott Country Report – Spain 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 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 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.

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

United we Stand Page 5 Supported by an educational grant from Abbott Country Report – Spain 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 149 responses were received from IBD patients in Spain. The most important characteristics of the sample who responded are: Forms of IBD: 57% of respondents have Crohn’s 39% have Ulcerative Colitis Gender: 74% of response was from women 26% of response was from men Age group: 90% of responses were from year olds

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

United we Stand Page 7 Supported by an educational grant from Abbott Country Report – Spain

United we Stand Page 8 Supported by an educational grant from Abbott Country Report – Spain MOST COMMON FORMS OF IBD (Q1) Crohn’s Disease is the most prevalent of the inflammatory bowel conditions affecting respondents to the survey (57% say they have this) compared to 39% who say they suffer from Ulcerative Colitis.

United we Stand Page 9 Supported by an educational grant from Abbott Country Report – Spain IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (90 responses, or 60% of the total) Of this fully employed group, 46% claimed to have Crohn’s Disease and 49% claimed to have Ulcerative Colitis.

United we Stand Page 10 Supported by an educational grant from Abbott Country Report – Spain BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 62% of respondents saw a specialist within 6 months of their symptoms starting, 18% did so within 6 months to a year thus, 80% of all respondents saw a specialist within the first year of their illness There are some differences between age groups on this: Those aged are most likely to be diagnosed quickly (65% reported that this happened within 6 months, and 80% within a year)

United we Stand Page 11 Supported by an educational grant from Abbott Country Report – Spain GETTING A DIAGNOSIS (Q2 & 4) 93% 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 60% had to visit at least twice or more, and 26% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 66% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: 46% got their diagnosis in less than 6 months For another 21% it took 6 months to 1 year Women (47%) seem slightly more likely than men (44%) to be diagnosed within 6 months, but this difference is not statistically significant.

United we Stand Page 12 Supported by an educational grant from Abbott Country Report – Spain GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 13% of respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 12% had to wait 5 years or more for a diagnosis. 88% of people with Ulcerative Colitis received their diagnosis within a year, and 72% were diagnosed within 6 months Rather fewer (52%) of those with Crohn’s Disease were diagnosed within a year, and only 28% received a diagnosis within 6 months

United we Stand Page 13 Supported by an educational grant from Abbott Country Report – Spain 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: 57% are concerned about the long-term effects of steroids on their health 52% have joint involvement associated with IBD 48% experience side-effects from steroids 38% experience skin involvement associated with IBD 32% have used steroids for their condition 30% keep steroids on hand in case of an IBD flare 25% regularly use pain pills to relieve their IBD symptoms 15% have complications of surgery such as adhesions, wound infections or pain

United we Stand Page 14 Supported by an educational grant from Abbott Country Report – Spain

United we Stand Page 15 Supported by an educational grant from Abbott Country Report – Spain SATISFACTION WITH THE TREATMENT PLAN: (Q16) 76% 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 2% are very dissatisfied). Women are slightly more satisfied than men (77% versus 71%).

United we Stand Page 16 Supported by an educational grant from Abbott Country Report – Spain MEDICATION Only 9% of respondents are not taking any medication currently (Q15). The medicine most likely to be taken at the moment: –42% claim to be taking drugs that affect the immune system –38% claim to be taking Aminosalicylates (5-ASA) –26% are taking biologic drugs –14% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 48% of participants say they experience side effects from taking steroids 57% say they are worried about the impact of steroids on their long-term health, with women being more concerned than men. Side effects and concerns about long-term effects of steroids are reported by a higher proportion of those with Crohn’s Disease, compared with those who suffer from Ulcerative Colitis

United we Stand Page 17 Supported by an educational grant from Abbott Country Report – Spain FREQUENCY OF HOSPITALISATION: (Q8) 85% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (39% for 1 – 5 days and 46% for longer than that). Women (49%) are more likely than men (38%) to have been hospitalised for more than 5 days Those with Crohn’s Disease are most likely to have been hospitalised (90%), but the majority (60%) will have spent no more than 1 – 5 days in hospital during the past 5 years Respondents with Ulcerative colitis are less likely to hospitalised (77%), but more likely to spend more than 5 days in hospital (67%)

United we Stand Page 18 Supported by an educational grant from Abbott Country Report – Spain OPERATIONS: (Q6 & 7) 57% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 16% have had one operation, 7% 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. Those who are fully employed are least likely to have had an operation (67%) The need to have had an operation seems to increase with age Respondents with Crohn’s are more likely than others to have had at least one operation (67% say that they have) and they are also most likely to have had several operations (40% have had more than one). The majority of people who have had an operation (79%) are very or somewhat satisfied with the outcome – but 15% express dissatisfaction. Men are more satisfied than women (89% compared to 74%) Those with Crohn’s Disease report slightly lower levels of satisfaction than those with Ulcerative Colitis.

United we Stand Page 19 Supported by an educational grant from Abbott Country Report – Spain AT THE CLINIC (Q17 – 24) 91% say that their clinic has a Specialist Gastroenterologist 40% say they have a Nurse who understands or specialises in IBD 23% say they have counsellor or psychologist 17% have a Family/general physician clinic/service or internal medicine doctor. Most people (82%) feel they do have adequate access to their IBD professional - however: 15% say they do not. 52% feel that at their appointment they didn’t get to tell the specialist something that was important –28% say this happens sometimes, –24% say it happens a lot. 63% say they wish that the gastroenterologist had asked more probing questions –22% say they wish this at least 75% of the time

United we Stand Page 20 Supported by an educational grant from Abbott Country Report – Spain 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 79% of respondents. This is followed by Family/general physician clinic/service (20%). Specialist/gastroenterologist (68%) and Family/general physician clinic/service practitioners (12%) are also seen as being best at returning calls promptly.

United we Stand Page 21 Supported by an educational grant from Abbott Country Report – Spain AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 72% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 34% say that their family/general physician clinic/service does this. Understanding how IBD impacts on your life (Q24) 70% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, while 22% believe that this applies to the Family/general physician clinic/service practitioner, and 15% who think it is the Nurses.

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

United we Stand Page 23 Supported by an educational grant from Abbott Country Report – Spain CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 72% of respondents claimed to be in remission/not flaring (more women than men), whilst 11% had chronically active conditions, and 16% were suffering periodic active flare ups. More women (74%) were in remission than men (64%). The same applies to the fully employed (75% in remission) compared to the less-employed or unemployed, or disabled respondents.

United we Stand Page 24 Supported by an educational grant from Abbott Country Report – Spain EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 47% of the sample claim that their last flare had been over 12 months ago. By contrast, 13% had experienced a flare in the previous month, and a further 15% had experienced one between 1 and 3 months ago – so a total of 28% within the last 3 months as a whole. Amongst the fully employed, fewer (8%) had suffered a flare in the previous month Men seem more likely (33%) to have experienced a flare in the past 3 months than women (where it applies to 26%)

United we Stand Page 25 Supported by an educational grant from Abbott Country Report – Spain NUMBER OF FLARE-UPS EXPERIENCED (Q27) 5% of respondents claimed that their condition was always flaring (the lowest recorded of any countries reported in this survey), whilst 23% claimed that they had experienced no flare at all in the past two years. A further 10% claim to have experienced at least 7 episodes in the past two years, whilst 44% have experienced between 1 and 3 episodes. This pattern of results is the same for both men and women, with no significant differences

United we Stand Page 26 Supported by an educational grant from Abbott Country Report – Spain COPING WITH IBD FLARE-UPS (Q28) 61% 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. This increases very slightly to 62% of all women respondents, and falls to 57% of all male respondents. At the other end of the scale, only 16% felt that their plans were not really disrupted. The age group were most likely to have plans disrupted (71% more likely than not), along with those who are unemployed or under-employed or disabled/seeking disability status, which is consistent with the fact that these are probably the people with the most chronic conditions.

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

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

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

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

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

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

United we Stand Page 33 Supported by an educational grant from Abbott Country Report – Spain OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35) Referring back to their most recent experience, when they are between flares: 61% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but 39% say that their life is affected 23% of all respondents say that their life is significantly affected (rising to 37% of men, and 31% of those with Crohn’s) Over half of respondents (53%) say they hardly ever/never have to cancel or reschedule an engagement or meeting because of their bowel disease (but 42% report that it can be necessary, including 36% of those who are fully employed)

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

United we Stand Page 35 Supported by an educational grant from Abbott Country Report – Spain 54% of respondents say they feel stressed or pressured about taking time off work due to IBD (Q43) 34% have not had any time off in the past year, due to IBD – but 66% have 27% have had more than 25 days absence (29% of women say this, compared to 21% of men). While 66% have not made adjustments to their working life to avoid having to take time off, 34% say that they have done this –38% of those with Crohn’s Disease have made adjustments, compared to 26% of respondents with Ulcerative Colitis (Q44). INCIDENCE OF BEING ABSENT FROM WORK

United we Stand Page 36 Supported by an educational grant from Abbott Country Report – Spain THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Doctor’s appointment (68%) Hospital/emergency department visit (43%) – 52% of those with Crohn’s Disease say this, compared to 31% of respondents with Ulcerative Colitis Fatigue, and/or not enough energy to get through the day (42%) Cramping or painful abdomen (32%) ATTITUDES IN THE WORKPLACE: (Q47/48) 75% say they have not been the victims of complaints or unfair comments about their performance – but 25% report that they have (Q47). 32% of those with Crohn’s Disease say this has happened, compared to only 15% of respondents with Ulcerative Colitis. 78% deny that they have suffered from discrimination in the workplace, but 22% say that they have (Q48)

United we Stand Page 37 Supported by an educational grant from Abbott Country Report – Spain HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): 34% of those who took part in the survey said that their IBD does not affect their behaviour at work (people with Ulcerative Colitis being more positive on this point than those with Crohn’s Disease). For the rest the most prevalent effects of IBD seem to be: 1.Being less motivated (26%) 2.Being irritable at work (18%) 3.Not participating in social activities at work (13%)

United we Stand Page 38 Supported by an educational grant from Abbott Country Report – Spain HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 60% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 35% of respondents feel this very strongly. Respondents with Crohn’s Disease are more likely to feel that they have been disadvantaged – 69% say this, compared to 44% who suffer from Ulcerative Colitis. In addition, 58% of respondents say that they have lost or have had to quit a job because of IBD – again, those with Crohn’s Disease (67%) are more affected than respondents with Ulcerative Colitis (38%).

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

United we Stand Page 40 Supported by an educational grant from Abbott Country Report – Spain INTIMATE RELATIONSHIPS (Q52/53) 45% of all respondents say that their IBD has prevented them from pursuing intimate relationships –51% of women say this, compared to 26% of men On the other hand, 39% have not found their IBD has been an impediment in the pursuit of intimate relationships 54% deny that it has caused an intimate relationship to end – but 36% say that it has (42% with Crohn’s Disease compared to 26% with Ulcerative Colitis) MAKING FRIENDS (Q54) The majority of respondents (65%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (19%) say that it has (rising to 29% of men)

United we Stand Page 41 Supported by an educational grant from Abbott Country Report – Spain EDUCATION (Q55) 39% 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 55% among men and 45% among respondents with Crohn’s Disease.

United we Stand Page 42 Supported by an educational grant from Abbott Country Report – Spain AVAILABILITY OF TOILETS (Q56) 28% of respondents claim that other people sometimes joke about their frequent need to go to the toilet 69% frequently consider the availability of toilets when they plan to attend something 50% worry about the ready availability of toilets whenever they go somewhere new 32% keep a list of clean, accessible toilets and consider this when they leave home – this is an approach that is more likely to be used by respondents who are not fully employed. 16% say they have had to be rude to people at times in order gain access to a toilet

United we Stand Page 43 Supported by an educational grant from Abbott Country Report – Spain EFFECTS ON SLEEP (Q56) 42% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects those who are under- or unemployed more than those who are working full time. Those with Crohn’s Disease (46%) are more inclined to have broken sleep compared to those with Ulceratve Colitis (33%).

United we Stand Page 44 Supported by an educational grant from Abbott Country Report – Spain 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 49% of them, but for 43% it made them more optimistic, particularly people aged 19 – 34 (56%). EFCCA and similar patient associations: (Q58 – 60) 68% of respondents have engaged in some way with EFCCA member associations. However, 32% have not done so. Importantly, 70% 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.

United we Stand Page 45 Supported by an educational grant from Abbott Country Report – Spain 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 (59%) 2.Receiving patient information leaflets from their national IBD association (59%) 3.Subscribing to newsletters or magazines from their national IBD association (48%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (2%) Become a leader, or join a committee within their national IBD association (8.1%) Help their national IBD association in fundraising (8.7%)

United we Stand Page 46 Supported by an educational grant from Abbott Country Report – Spain CONTACT DETAILS For more information about EFCCA, national IBD associations, or the IMPACT survey, please visit the IMPACT web portal, at European Federation of ulcerative Colitis and Crohn’s Associations (EFCCA) Rue Des Chartreux 33-35, Brussels, 1000, Belgium