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

United we Stand Page 2 Supported by an educational grant from Abbott Country Report - Netherlands 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 - Netherlands 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 - Netherlands Final Response Rate by Country Final Response Rate Total = 4995

United we Stand Page 5 Supported by an educational grant from Abbott Country Report - Netherlands 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 452 responses were received from IBD patients in the Netherlands. The most important characteristics of the sample who responded are: Forms of IBD: 66% of respondents have Crohn’s 29% have Ulcerative Colitis Gender: 72% of response was from women 28% of response was from men Age group: Majority of responses (86%) were from year olds

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

United we Stand Page 8 Supported by an educational grant from Abbott Country Report - Netherlands 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 (66% say they have this) Women (72%) are more likely to suffer from Crohn’s than men (50%) Conversely, male respondents (45%) are slightly more likely to suffer from Ulcerative Colitis than women (23%). The under 19 age group appear more likely to suffer with Crohn’s than other forms of IBD, compared to respondents as a whole, but this is a small group (only 15 respondents) Those aged 55 or over appear more likely than others to suffer from Ulcerative Colitis.

United we Stand Page 9 Supported by an educational grant from Abbott Country Report - Netherlands IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK Looking at Employment and Disability Status, the most represented group is Fully Employed (107 responses) with 54% having Crohn’s Disease and 44% 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 99 who say they are under-employed due to IBD, –73% have Crohn’s Disease and –20% have Ulcerative Colitis Of the 47 who say they are un-employed due to IBD, –70% have Crohn’s Disease and –21% have Ulcerative Colitis

United we Stand Page 10 Supported by an educational grant from Abbott Country Report - Netherlands BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3) Being directed to someone who can help seems to happen reasonably quickly for most people – 52% of respondents saw a specialist within 6 months of their symptoms starting, 16% did so within 6 months to a year thus, 68% of all respondents saw a specialist within the first year of their illness 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 75% of men, but only 66% of women.

United we Stand Page 11 Supported by an educational grant from Abbott Country Report - Netherlands GETTING A DIAGNOSIS (Q2 & 4) 78% 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 31% had to visit at least twice or more, and 9% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 51% 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 16% it took 6 months to 1 year Men (41%) were slightly more likely than women (33%) to be diagnosed within 6 months

United we Stand Page 12 Supported by an educational grant from Abbott Country Report - Netherlands GETTING A DIAGNOSIS (Q2 & 4) (continued) However: 13% 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.

United we Stand Page 13 Supported by an educational grant from Abbott Country Report - Netherlands 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% have joint involvement associated with IBD 53% have used steroids for their condition 43% experience side-effects from steroids 39% are concerned about the long-term effects of steroids on their health 38% experience skin involvement associated with IBD 31% regularly use pain pills to relieve their IBD symptoms 16% keep steroids on hand in case of an IBD flare 13% 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 - Netherlands

United we Stand Page 15 Supported by an educational grant from Abbott Country Report - Netherlands SATISFACTION WITH THE TREATMENT PLAN: (Q16) 76% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 10% say that they are either somewhat or very dissatisfied (only 3% are very dissatisfied) Those who are least satisfied are those who are Disabled (18%). The results for all of the other groups are fairly similar to the overall.

United we Stand Page 16 Supported by an educational grant from Abbott Country Report - Netherlands MEDICATION All of the respondents are currently taking medication, 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: –41% claim to be taking drugs that affect the immune system, increasing to 55% for Students, 50% for respondents that are unable to receive disability status and those with Crohn’s disease (47%) –33% claim to be taking Aminosalicylates (5-ASA), particularly men (41%) and those with Ulcerative Colitis (65%) –31% are taking biologic drugs, 36% of respondents aged between 19 and 34 and 38% of respondents with Crohn’s disease –23% are taking corticosteroids, particularly respondents that are Disabled (33%) Using steroids, specifically: (Q5 & 10) 43% of participants say they experience side effects from taking steroids– this rises to 65% for disabled respondents, compared to 36% for fully employed 39% say they are worried about the impact of steroids on their long-term health Side effects and concerns about long-term effects of steroids are broadly similar regardless of the IBD-related condition of the respondent.

United we Stand Page 17 Supported by an educational grant from Abbott Country Report - Netherlands FREQUENCY OF HOSPITALISATION: (Q8) 88% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (38% for 1 – 5 days and 50% for longer than that – with 56% of patients aged between 19 and 34 having spent 6 days or more in hospital). Those with Crohn’s Disease are most likely to have been hospitalised (90%), but the majority of these (48%) will have spent no more than 1 – 5 days in hospital during the past 5 years On the other hand, 15% of those with Ulcerative Colitis have not been in hospital (compared to only 10% of those with Crohn’s Disease) - but when they are hospitalised it is more likely to be for longer (66% have been hospitalised for 6 days or more in the past 5 years)

United we Stand Page 18 Supported by an educational grant from Abbott Country Report - Netherlands OPERATIONS: (Q6 & 7) 59% of respondents have not had a surgical operation to treat their IBD or IBD- related problems. However, 16% have had one operation, 6% 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. 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 (51% say that they have) and they are also most likely to have had several operations (31% have had more than one). The majority of people who have had an operation (80%) are very or somewhat satisfied with the outcome – but 9% express dissatisfaction. These findings are broadly similar for both men and women, but there are differences across the age groups. Lowest levels of satisfaction are seen among those that are under-employed due to IBD.

United we Stand Page 19 Supported by an educational grant from Abbott Country Report - Netherlands AT THE CLINIC (Q17 – 24) 77% say that their clinic has a Specialist Gastroenterologist, 62% say they have a Nurse and 44% say they have a Family/general physician/service or internal medicine doctor that is available at their clinic. Younger and disabled respondents are more likely than others to say their clinic has a counsellor or psychologist. Most people (74%) feel they do have adequate access to their IBD professional - however: 20% say they do not. 45% feel that at their appointment they didn’t get to tell the specialist something that was important –25% say this happens sometimes, –20% say it happens a lot. 52% say they wish that the gastroenterologist had asked more probing questions –17% say they wish this at least 75% of the time –Those with Ulcerative colitis seem to be even less satisfied on this point, than others

United we Stand Page 20 Supported by an educational grant from Abbott Country Report - Netherlands 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 53% of respondents (rising to 60% for student respondents). This is followed by Family/general physician clinic/service (41%) and Nurse (36% - but higher amongst female respondents). The same proportions, with minor differences, apply to all the employment and disability groups. Specialist/gastroenterologist (48%) and Family/general physician clinic/service practitioners (33%) are seen as being best at returning calls promptly, followed by Nurses (32%).

United we Stand Page 21 Supported by an educational grant from Abbott Country Report - Netherlands AT THE CLINIC Giving patients sufficient time at the consultation (Q23) 60% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, 45% say that their family/general physician clinic/service and 38% say the Nurse does this. 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 33% who believe that this applies to the Family/general physician clinic/service practitioner, and 34% who think it is the Nurses.

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

United we Stand Page 23 Supported by an educational grant from Abbott Country Report - Netherlands CURRENT STATUS OF DISEASE (Q25) At the time of completing the survey, 54% of respondents claimed to be in remission/not flaring, whilst 27% had chronically active conditions, and 17% were suffering periodic active flare ups. Amongst the group who were unemployed due to IBD, 32% claimed a chronically active condition (40% for the Disabled group, and 32% for the under-employed due to IBD group). –By contrast 60% of the fully employed group claimed to be in remission (23% chronically active) 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.

United we Stand Page 24 Supported by an educational grant from Abbott Country Report - Netherlands EXPERIENCE OF PREVIOUS FLARE (Q26) A total of 32% 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 15% had experienced one between 1 and 3 months ago – so a total of 31% within the last 3 months as a whole. Women seem marginally more likely than men to have suffered a recent flare. Whereas 42% of the fully employed group have not suffered a flare in the last 12 months, this only applies to 23% of the unemployed, and 27% of the under-employed groups People with Crohn’s are similarly less likely to have experienced a flare in the past 12 months (35%) than those with ulcerative colitis (28%)

United we Stand Page 25 Supported by an educational grant from Abbott Country Report - Netherlands NUMBER OF FLARE-UPS EXPERIENCED (Q27) 14% of respondents claimed that their condition was always flaring (16% of women, and 10% of men), whilst another 14% 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 48% have experienced between 1 and 3 episodes. Those claiming that their condition is always flaring are most likely to be in the over 35 age group, and the disabled group (28%). By contrast, chronic flaring is far less likely amongst the fully employed group (just 7%), compared to those who are unemployed (19%) or under-employed (17%). Once again, this seems to indicate a clear relationship between severity of the IBD condition, and ability to work.

United we Stand Page 26 Supported by an educational grant from Abbott Country Report - Netherlands 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. This rises to 60% for women (men=44%) At the other end of the scale, only 19% felt that their plans were not really disrupted. The 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.

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

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

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

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

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

United we Stand Page 33 Supported by an educational grant from Abbott Country Report - Netherlands 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 still affected, and 27% report that their lives are significantly affected –Those who are fully employed seem far less affected than other groups (27% are affected) –By comparison, 69% of the unemployed say their lives are affected (and 43% claim they are significantly affected) 47% say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 47% also report that it can be necessary, rising to 80% for the unemployed group)

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

United we Stand Page 35 Supported by an educational grant from Abbott Country Report - Netherlands 48% of respondents say they feel stressed or pressured about taking time off work due to IBD – those aged under 35 are most likely to be affected (Q43) 30% have not had any time off in the past year, due to IBD – but 70% have 29% have had more than 25 days absence (especially those who are under- or unemployed, and those who are disabled or seeking 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 (Q44) –68% of respondents who are fully employed have not made any adjustments at all, but 65% of those who are under-employed due to IBD now work part-time –Men are less likely than women to have made any adjustments (58% say they have not, compared to 43% among female respondents) INCIDENCE OF BEING ABSENT FROM WORK

United we Stand Page 36 Supported by an educational grant from Abbott Country Report - Netherlands THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Fatigue, and/or not enough energy to get through the day (60%) Cramping or painful abdomen (50%) Hospital/emergency department visit (43%) Doctor’s appointment (36%) ATTITUDES IN THE WORKPLACE: (Q47/48) 73% say they have not been the victims of complaints or unfair comments about their performance – but 27% report that they have (Q47). Men (slightly more than women), those who are unemployed through IBD and disabled respondents 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 (rising to 40% of those who are unemployed due to IBD) (Q48)

United we Stand Page 37 Supported by an educational grant from Abbott Country Report - Netherlands HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 31% of those who took part in the survey said that their IBD does not affect their behaviour at work (rising to 53% of those in full employment). For the rest (69%) the most prevalent effects of IBD seem to be: 1.Being less motivated (21%) 2.Being quiet or quieter during meetings (19%) 3.Being irritable at work (18%) 4.Not participating in social activities at work (18%)

United we Stand Page 38 Supported by an educational grant from Abbott Country Report - Netherlands HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 72% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 42% of respondents feel this very strongly. Those most likely to say they have been disadvantaged are: 1. Unemployed due to IBD (100% agree that prospects have been affected) 2. Unable to receive disability status (89%) 3. Under-employed due to IBD (85%) In addition, 52% of respondents say that they have lost or have had to quit a job because of IBD (rising to 94% among those who are disabled and 91% among those who are unemployed due to IBD). 54% of female respondents say they have been affected, compared to 45% of the males.

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

United we Stand Page 40 Supported by an educational grant from Abbott Country Report - Netherlands INTIMATE RELATIONSHIPS (Q52/53) 26% of all respondents say that their IBD has prevented them from pursuing intimate relationships - rising to 46% among those who are disabled and 41% among those who are under-employed due to IBD On the other hand, 61% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 71% deny that it has caused an intimate relationship to end. MAKING FRIENDS (Q54) The majority of respondents (58%) 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 who are disabled are more inclined to say this).

United we Stand Page 41 Supported by an educational grant from Abbott Country Report - Netherlands EDUCATION (Q55) Over half of those who took part in the survey (56%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting. It is an even more prevalent issue for those who have any form of disability and for people who are under- or unemployed due to IBD.

United we Stand Page 42 Supported by an educational grant from Abbott Country Report - Netherlands 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. 25% 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 62% frequently consider the availability of toilets when they plan to attend something To help them to deal with going out: 28% 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: 19% of respondents say they have had to be rude to people at times in order gain access to a toilet – men are less likely to have to do this, than women,

United we Stand Page 43 Supported by an educational grant from Abbott Country Report - Netherlands EFFECTS ON SLEEP (Q56) 36% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women even more than men (40% compared to 25%) and those who are under- or unemployed, or who are students, more than those who are fully employed. Those with Ulcerative Colitis are slightly less inclined to have broken sleep compared to those with other IBD-related conditions.

United we Stand Page 44 Supported by an educational grant from Abbott Country Report - Netherlands 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 (30%) said that it made them more optimistic. EFCCA and similar patient associations: (Q58 – 60) 40% of respondents have engaged in some way with EFCCA member associations (with those who are disabled, unable to receive disability status, or seeking disability being most inclined to do so, also women and those aged ). The groups that are least likely to be engaged are aged under 19 or over 54. Importantly, 48% 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 - Netherlands 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.Subscribing to newsletters or magazines from their national IBD association (33%) 3.Receiving patient information leaflets from their national IBD association (26%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (0.2%) Become a leader, or join a committee within their national IBD association (0.4%) Help their national IBD association in fundraising (0.7%)

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