First full results – November 2011 IMPACT 2010-11 Crohn’s and Ulcerative Colitis Patient Life Impact Survey First full results – November 2011

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: Understanding perceptions of the quality of Health Care provided Looking at access to healthcare and support facilities in various countries (from the perspective and perceptions of the patient) 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

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 29th 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 5th 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.

Final Response Rate by Country Final Response Rate Total = 4995

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. The most important characteristics of the sample who responded are: Forms of IBD: 63% of respondents have Crohn’s 33% have Ulcerative Colitis Gender: 66% of response was from women 33% of response was from men Age group: Majority of responses (68%) were from 19-44 year olds

REPORT FORMAT Tis 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

MOST COMMON FORMS OF IBD (Q1) Crohn’s Disease is the most prevalent of the inflammatory bowel conditions affecting respondents to the survey (63% say they have this) Women (64%) are slightly more likely to suffer from Crohn’s than men (61%) - though in line with the response profile already noted for the survey as a whole (women outnumbering male respondents by a ratio of 2:1), the number of female respondents with Crohn’s Disease is much higher at 1,975 compared to only 940 men with the same condition. Conversely, male respondents (36%) are slightly more likely to suffer from Ulcerative Colitis than women (32%). The under 18 age group (65%) appear more likely to suffer with Crohn’s than other forms of IBD, compared to respondents as a whole.

IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (2,218 responses) with 59% having Crohn’s Disease and 37% 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 458 who say they are under-employed due to IBD, 67% have Crohn’s Disease and 28% have Ulcerative Colitis Of the 387 who say they are un-employed due to IBD, 70% have Crohn’s Disease and 25% have Ulcerative Colitis

BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 49% of respondents saw a specialist within 6 months of their symptoms starting, 21% did so within 6 months to a year thus, 70% 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: 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 74% of men, but only 68% of women. The under-18 respondent age group are most likely to be diagnosed more quickly (63% reported that this happened within 6 months, and 82% within a year) Those aged 35 and above have to wait much longer (and those aged 55 and above seem to wait the longest)

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 33% had to visit at least twice or more, and 8% of these claim that it took 5 visits to be diagnosed In terms of speed of diagnosis, 54% 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 22% it took 6 months to 1 year Men (33%) were slightly more likely than women (31%) to be diagnosed within 6 months Younger patients (under 18) seem most likely to get a speedy diagnosis (40% within 6 months)

GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 13% of respondents say it took 1 – 2 years to get a diagnosis This increases to over 20% for patients aged 35 or over Amongst the total sample, 18% had to wait 5 years or more for a diagnosis. Indeterminate Colitis and Microscopic/collagenous colitis seem to be the conditions that take the longest time to diagnose, with a number of respondents saying these can take over 5 years to be identified, while Ulcerative Colitis tends to be diagnosed within a year (often within 6 months).

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: 52% have used steroids for their condition 49% are concerned about the long-term effects of steroids on their health 49% have joint involvement associated with IBD 42% experience side-effects from steroids 34% experience skin involvement associated with IBD 28.5% regularly use pain pills to relieve their IBD symptoms 28% keep steroids on hand in case of an IBD flare 15% have complications of surgery such as adhesions, wound infections or pain

SATISFACTION WITH THE TREATMENT PLAN: (Q16) 70% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 14% say that they are either somewhat or very dissatisfied (only 4% are very dissatisfied) Men are slightly more satisfied than women (72% versus 69%) Those who are least satisfied are: Respondents with Indeterminate Colitis (29% dissatisfied) Those whose IBD type is still unconfirmed (50% dissatisfied - but there are only 34 people in this group) also those who are: Un-employed due to IBD (29% dissatisfied) Seeking disability (26% dissatisfied) Unable to receive disability status (24% dissatisfied) Under-employed due to IBD (20% dissatisfied)

Only 6% of respondents are not taking any medication currently, and very few respondents (1%) 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 (72%) or Indeterminate Colitis (61%) 33% claim to be taking drugs that affect the immune system 27% are taking biologic drugs 21% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 42% of participants say they experience side effects from taking steroids– this rises to 45% for women compared to 38% for men 49% say they are worried about the impact of steroids on their long-term health, with women and younger respondents being more concerned than men and the older age groups. Side effects and concerns about long-term effects of steroids are broadly similar regardless of the IBD-related condition of the respondent. MEDICATION

FREQUENCY OF HOSPITALISATION: (Q8) 85% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (37% for 1 – 5 days and 48% for longer than that – with almost 60% of younger patients having spent 6 days or more in hospital). Those with Crohn’s Disease are most likely to have been hospitalised (89%), but the majority of these (52%) will have spent no more than 1 – 5 days in hospital during the past 5 years On the other hand, 22% of those with Ulcerative Colitis have not been in hospital (compared to only 11% of those with Crohn’s Disease) - but when they are hospitalised it is more likely to be for longer (65% have been hospitalised for 6 days or more in the past 5 years)

OPERATIONS: (Q6 & 7) 60% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 16% have had one operation, 8% have had two operations, and 16% have had 3 or more. Amongst this latter 16%, it was noticeable that 7% have had 5 or more operations. Younger patients are least likely to have had an operation 45% of those aged 55 or more have had at least one (and 30% have had more than that) 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 Respondents with Crohn’s are more likely than others to have had at least one operation (56% say that they have) and they are also most likely to have had several operations (34% have had more than one). The majority of people who have had an operation (73%) are very or somewhat satisfied with the outcome – but 11% 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 Indeterminate Colitis and (to a lesser extent) those whose ability to work has been affected by their condition.

88% say that their clinic has a Specialist Gastroenterologist and 45% say they have a Nurse who understands or specialises in IBD. Younger respondents are more likely than others to say their clinic has a counsellor or psychologist. Most people (69%) feel they do have adequate access to their IBD professional - however: 24% say they do not. 53% feel that at their appointment they didn’t get to tell the specialist something that was important 25% say this happens sometimes, 28% say it happens a lot. 65% say they wish that the gastroenterologist had asked more probing questions 26% say they wish this at least 75% of the time Those with Indeterminate Colitis seem to be even less satisfied on this point, than others Highest levels of satisfaction are seen among younger respondents (aged 18 or less). AT THE CLINIC (Q17 – 24)

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 63% of respondents (rising to 67% for male respondents). This is followed by Family/general physician clinic/service (35%) and Nurse (21% - but higher amongst female respondents). The same proportions, with minor differences, apply to all the employment and disability groups. However, those with microscopic/collagenous colitis are more likely to consider the Family/general physician clinic/service and Counsellor or psychologist practitioners as offering the best range of options for getting in touch. Specialist/gastroenterologist (53%) and Family/general physician clinic/service practitioners (29%) are seen as being best at returning calls promptly, followed by Nurses (20%). AT THE CLINIC

AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 65% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 35% say that their family/general physician clinic/service does this. Understanding how IBD impacts on your life (Q24) 60% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, compared to 28% who believe that this applies to the Family/general physician clinic/service practitioner, and 19% who think it is the Nurses. Men (more than women) are inclined towards thinking that the Specialist/Gastroenterologists understand the impact better, whilst women are more inclined to think this of Nurses.

CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 50% of respondents claimed to be in remission/not flaring (slightly more men than women), whilst 25% had chronically active conditions, and 23% were suffering periodic active flare ups. Amongst the group who were unemployed due to IBD, 37% claimed a chronically active condition (36% for the Disabled group, and 32% for the under-employed due to IBD group). By contrast the fully employed groups were 10% more likely than average to be in remission. On the basis of these differences, there does appear to be a correlation between severity of the condition, and the effect on the individual’s ability to work.

EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 30% of the sample claim that their last flare had been over 12 months ago. By contrast, 18% had experienced a flare in the previous month, and a further 17% had experienced one between 1 and 3 months ago – so a total of 35% within the last 3 months as a whole. There was no difference at all between the genders on this point. The 18 and under group seem more likely to have experienced a more recent flare, as well as those who were unemployed due to their IBD (28% in the last month), and those with microscopic/collagenous colitis (29% in the last month), and those with unconfirmed forms of IBD (40% in the last month)

NUMBER OF FLARE-UPS EXPERIENCED (Q27) 15% of respondents claimed that their condition was always flaring (17% of women, and 12% of men), whilst another 13% 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 42% 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 unemployed (28%) due to their IBD. Chronic flaring is also more likely amongst Retired and Disabled groups, and those who are under-employed, but 30% less likely amongst the fully employed. Once again, this seems to indicate a clear cause-and-effect relationship between severity of the IBD condition, and ability to work.

COPING WITH IBD FLARE-UPS (Q28) 53% 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, only 22% felt that their plans were not really disrupted. The 19-34 age group were most likely to have plans disrupted, along with those who are unemployed or under-employed or disabled, which is consistent with the fact that these are probably the people with the most chronic conditions. Women appear slightly more likely than men to have planned events disrupted by their condition.

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.

INCIDENCE OF BLEEDING (Q29/36)

INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

INCIDENCE OF FEELING TIRED, WEAK, OR WORN OUT (Q31/38)

URGENCY OF BOWEL MOVEMENTS (Q32/39) DURING A FLARE BETWEEN FLARES None 11% 34% At least daily 89% 66% 5 – 7 days a week 55% (40% = 7 days) 43% Most affected Ulcerative Colitis, Indeterminate Colitis disabled, unemployed; Indeterminate Colitis, Crohn’s Disease; aged over 34 Least affected Crohn’s Disease; students; retired

FREQUENCY OF RUNNY STOOLS/ EPISODES OF DIARRHOEA (Q33/40)

OTHER IMPACTS OF IBD BETWEEN FLARES (Q41/42) Referring back to their most recent experience, when they are between flares: 51% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but 49% say that their life is significantly affected Those who are fully employed or who are students tend to report far fewer incidences More numerous incidences are reported by those who are unemployed or who are disabled. Over half of respondents (56%) say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 37% report that it can be necessary – particularly those who are unemployed)

INCIDENCE OF BEING ABSENT FROM WORK 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 (Q43) 26% have not had any time off in the past year, due to IBD – but 74% have 26% have had more than 25 days absence (especially those who are under- or unemployed, and those with a disability) (Q45) While 58% have not made adjustments to their working life to avoid having to take time off, 42% say that they have done this NB 56% of those who are now under-employed have opted to go part-time (Q44).

THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Fatigue, and/or not enough energy to get through the day (51% - rising to 75% among respondents who are under-employed and 67% among the unemployed) Doctor’s appointment (49%) Cramping or painful abdomen (46%) Hospital/emergency department visit (44%) 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). Those who are unemployed (56%) are most likely to say that this has happened. 79% deny that they have suffered from discrimination in the workplace, but 21% say that they have (rising to 52% of those who are unemployed) (Q48)

HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 28% 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 (72%) the most prevalent effects of IBD seem to be: Being less motivated (29%)* Not participating in social activities at work (25%)* Being quiet or quieter during meetings (23%) Being irritable at work (22%) *particularly affects those who are under-employed or who are seeking disability

HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 51% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 36% of respondents feel this very strongly. Unsurprisingly, those most likely to say they have been disadvantaged are: Unemployed due to IBD (96% agree that prospects have been affected) Unable to receive disability status (92%) Under-employed due to IBD (88%) Seeking disability (84%) Disabled (82%) Retired (76%) In addition, 44% of respondents say that they have lost or have had to quit a job because of IBD (rising to 93% among those who are unemployed).

INTIMATE RELATIONSHIPS (Q52/53) 40% of all respondents say that their IBD has prevented them from pursuing intimate relationships  - rising to 64% among those with Microscopic/collagenous colitis (a very small group) and 51 – 58% among those who are disabled and/or under or unemployed. (These groups are also more likely to say that their IBD has caused an intimate relationship to end). On the other hand, 45% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 66% deny that it has caused an intimate relationship to end. MAKING FRIENDS (Q54) The majority of respondents (57%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (29%) say that it has (underemployed or unemployed respondents and those with a disability are more inclined to say this).

EDUCATION (Q55) Just over half of those who took part in the survey (52%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – rising to 61% among younger respondents aged 18 or less. It is an even more prevalent issue for those who have any form of disability and for people who are under- or unemployed.

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. 27% 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, 2 out of 3 respondents (66%) 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, 27% 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: 20% of respondents say they have had to be rude to people at times in order gain access to a toilet – younger people are least likely to find this is necessary, and it seems to affect the small group with Microscopic/collagenous colitis far more than others.

EFFECTS ON SLEEP (Q56) 40% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women even more than men (43% compared to 33%) and those who are under- or unemployed more than those who are working full time. Those with Ulcerative Colitis are slightly less inclined to have broken sleep compared to those with other IBD-related conditions.

THE BENEFITS OF BEING IN CONTACT WITH PEOPLE WHO UNDERSTAND WHAT IT’S LIKE TO HAVE IBD Others with a similar condition: (Q57) The first time respondents met someone else with IBD seems to have had little effect on many of them, but a significant proportion (39%) said that it made them more optimistic, rising to 43% among those aged under 35 and 46% among Students. EFCCA and similar patient associations: (Q58 – 60) 44% of respondents have engaged in some way with EFCCA member associations (with those aged over 35 and those who are retired and/or disabled being most inclined to do so). The group that is least likely to be engaged is aged 19 – 34, and we recommend that work is done to improve awareness within this group. 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.

LEVEL OF INVOLVEMENT WITH A PATIENTS’ ASSOCIATION The most likely ways that people are associated with a member association are : Signing up to be a member of their national IBD association (37%) Receiving patient information leaflets from their national IBD association (34%) Subscribing to newsletters or magazines from their national IBD association (27%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (1%) Become a leader, or join a committee within their national IBD association (3%) Help their national IBD association in fundraising (4%)

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/impact Email ben.wilson@efcca.org European Federation of ulcerative Colitis and Crohn’s Associations (EFCCA) Rue Des Chartreux 33-35, Brussels, 1000, Belgium