1 / 46

IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey

IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey. First full results – November 2011 Country Report - Ireland. Survey Solutions was commissioned by EFCCA to conduct the IMPACT survey in late September 2010

elmo-rodriguez
Download Presentation

IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey First full results – November 2011 Country Report - Ireland

  2. 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 BACKGROUND

  3. 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. METHODOLOGY

  4. Final Response Rate by Country Final Response Rate Total = 4995

  5. 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. In total, 125 responses were received from Ireland (2.7% of the international total) The most important characteristics of the sample who responded are: Forms of IBD: 62% of respondents have Crohn’s 31% have Ulcerative Colitis Gender: 61% of response was from women 39% of response was from men Age group: Majority of responses (61%) were from 19-54 year olds, followed by 36% from those aged 35 – 54 – thus, 97% of the respondents are aged 19 – 54. RESPONSE RATE

  6. 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 REPORT FORMAT

  7. 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 irritable bowel conditions affecting respondents to the survey (62% say they have this) Women (68%) are slightly more likely to suffer from Crohn’s than men (52%) - though in line with the response profile already noted for the survey as a whole (women outnumbering male respondents), the number of female respondents with Crohn’s Disease is much higher at 52 compared to only 25 men with the same condition. Conversely, male respondents (44%) are more likely to suffer from Ulcerative Colitis than are women (24%). Respondents aged 19 - 34 (36%) are more likely to suffer from Ulcerative Colitis than are those aged 35 – 54 (23%), but their tendency to suffer from Crohn’s Disease is broadly similar. MOST COMMON FORMS OF IBD (Q1)

  8. Looking at Employment and Disability Status, the Fully Employed is the largest, representing 46% of the total response. Of this group, 55% have Crohn’s Disease and 40% have Ulcerative Colitis. Of the 10 respondents who say they are under-employed due to IBD, 50% have Crohn’s Disease and 30% have Ulcerative Colitis Of the 19 who say they are unemployed due to IBD, 47% have Crohn’s Disease and 42% have Ulcerative Colitis IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK

  9. Being directed to someone who can help seems to happen reasonably quickly for most people – 47% of respondents saw a specialist within 6 months of their symptoms starting, 24% did so within 6 months to a year thus, 71% 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: Men tend to see a specialist more quickly than women - 55% say they saw one within 6 months, compared to 42% of women who did so), and 78% of men saw a specialist within a year of their symptoms starting (compared to only 67% of women) Respondents in the 35 – 54 age group are most likely to see a specialist within 6 months (53%, compared to 42% of those aged 19 – 34) BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3)

  10. 66% 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 (Q4) 43% had to visit at least twice or more, and 18% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis (Q2), 48% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as related to IBD: 29% got their diagnosis in less than 6 months For another 19% it took 6 months to 1 year Men (34%) were more likely than women (26%) to be diagnosed within 6 months Patients aged 19 – 34 (26%) seem less likely than those aged 35 – 54 (37%) to get a speedy diagnosis within 6 months GETTING A DIAGNOSIS (Q2 & 4)

  11. We have also noted that: 20% of all respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 18% had to wait 5 years or more for a diagnosis. 63% of people with Ulcerative Colitis received their diagnosis within a year, and 45% were diagnosed within 6 months Rather fewer (36%) of those with Crohn’s Disease were diagnosed within a year, and only 19% received a diagnosis within 6 months GETTING A DIAGNOSIS (Q2 & 4) (continued)

  12. 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: 74% have used steroids for their condition 72% are concerned about the long-term effects of steroids on their health 68% experience side-effects from steroids 51% have joint involvement associated with IBD 50% experience skin involvement associated with IBD 46% regularly use pain pills to relieve their IBD symptoms 31% keep steroids on hand in case of an IBD flare 22% have complications of surgery such as adhesions, wound infections or pain IMPORTANT ATTRIBUTES OF IBD PATIENTS (Q5):

  13. 66% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 20% say that they are either somewhat or very dissatisfied (5% are very dissatisfied) Men are more satisfied than women (74% versus 63%) – and 25% of female respondents say they are dissatisfied (compared to only 12% of men) Respondents who are under- or unemployed due to IBD may be more likely to be dissatisfied with their treatment plan than those in full employment (however, response levels are low for these two groups, and the observed difference is not statistically significant) SATISFACTION WITH THE TREATMENT PLAN: (Q16)

  14. Only 3% of respondents are not taking any medication currently (Q15) The medicine most likely to be taken at the moment (Q9-14) 46% claim to be taking Aminosalicylates (5-ASA) 40% are taking biologic drugs 38% claim to be taking drugs that affect the immune system 28% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 68% of participants say they experience side effects from taking steroids 72% say they are worried about the impact of steroids on their long-term health, with those in the 19 – 34 age group being even more concerned than others. MEDICATION

  15. 90% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (48% for 1 – 5 days and 42% for longer than that). Men (46%) are more likely than women (40%) to have been hospitalised for more than 5 days Respondents with Ulcerative Colitis (59%) are far more likely than those with Crohn’s Disease (34%) to have been hospitalised for 6 days or more. FREQUENCY OF HOSPITALISATION: (Q8)

  16. 49% of respondents have not had a surgical operation to treat their IBD or IBD-related problems. However, 24% have had one operation, 8% have had two operations, and 19% have had 3 or more. 8% of all respondents have had 5 or more operations. Men (56%) are more likely than women (45%) to have had no operations Women (23%) are far more likely than men (8%) to have had 3 or more operations for their IBD-related problems Respondents in the 35 - 54 age group (60%) are more likely to have had at least one operation than those aged 19 - 34 (45%) Respondents with Crohn’s are more likely than others to have had at least one operation (63% say that they have) and they are also most likely to have had several operations (38% have had more than one). The majority of people who have had an operation (76%) are very or somewhat satisfied with the outcome – but 18% express dissatisfaction (23% of women, compared to 10% of men). Those with Crohn’s Disease report slightly higher levels of dissatisfaction (21%) than those with Ulcerative Colitis (9%). OPERATIONS: (Q6 & 7)

  17. 93% say that their clinic has a Specialist Gastroenterologist 59% say they have a Nurse who understands or specialises in IBD 11% have a Family/general physician clinic/service or internal medicine doctor. Most people (69%) feel they do have adequate access to their IBD professional - however: 7% say they do not. 73% feel that at their appointment they didn’t get to tell the specialist something that was important 27% say this happens sometimes, 46% say it happens a lot. 74% say they wish that the gastroenterologist had asked more probing questions 34% say they wish this at least 75% of the time Highest levels of satisfaction are seen among men Lowest levels of satisfaction are reported by women, also those aged 19 - 34 AT THE CLINIC (Q17 – 24)

  18. Communicating with healthcare professionals (Q21/22) Family/general physician clinic/service are thought to provide the best range of options for patients to get in touch, voted for by 47% of respondents, closely followed by Specialist/Gastroenterologist service practitioners (45%) and Nurses (40%). Nurses (42%), Family/general physician clinic/service practitioners (40%) and Specialist/Gastroenterologist service practitioners (39%) are rated similarly in terms of returning calls promptly – however, Women (36%) are less inclined than men (52%) to say that Nurses do so Respondents aged 35 – 54 (26%) are less likely than those aged 19 – 34 (45%) to say that Family/general physician clinic/service practitionersdo so(but are more likely to say they get the best response Specialist/Gastroenterologist service practitioners (51% compared to only 32% among those aged 19 – 34) AT THE CLINIC

  19. Giving patients sufficient time at the consultation (Q23) 52% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 49% say that their family/general physician clinic/service does this, followed by 38% who voted for the Nurse. Understanding how IBD impacts on your life (Q24) 47% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, while 37% believe that this applies to the Nurses, and 31% who think it is the Family/general physician clinic/service practitioner. Men, in particular, think that Nurses demonstrate a good level of understanding. AT THE CLINIC

  20. At the time of completing the survey, 47% of Irish respondents claimed to be in remission/not flaring (slightly more men than women), whilst 23% had chronically active conditions, and 29% were suffering periodic active flare ups. Men (54%) are significantly more likely than women (43%) to be in remission, wheras women are far more likely than men to have a chronically active condition (28% for women, 15% for men) CURRENT STATUS OF DISEASE (Q25)

  21. A total of 28% of the sample in Ireland claim that their last flare had been over 12 months ago. By contrast, 14% had experienced a flare in the previous month, and a further 23% had experienced one between 1 and 3 months ago – so a total of 37% within the last 3 months as a whole. There seems little difference between sub groups on this aspect, except that the fully employed and those with Crohn’s Disease are more likely than other groups to have had their last flare over 12 months ago EXPERIENCE OF PREVIOUS FLARE (Q26)

  22. 16% of respondents claimed that their condition was always flaring (no difference between genders), whilst 6.5% claimed that they had experienced no flare at all in the past two years. A further 11% claim to have experienced at least 7 episodes in the past two years, whilst 51% have experienced between 1 and 4 episodes. Those claiming that their condition is always flaring are most likely to be aged 19-34, and in the group that is unemployed due to their IBD. It also applies more to those with ulcerative colitis. NUMBER OF FLARE-UPS EXPERIENCED (Q27)

  23. 71% 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 to 76% of all women respondents, and falls to 62% of all male respondents. At the other end of the scale, only 12% felt that their plans were not really disrupted. The 19-34 age group were most likely to have plans disrupted (80% more likely than not), along with those who are unemployed or under-employed where it rises to 100% (NB. these are small response groups), which is consistent with the fact that these are probably the people with the most chronic conditions. COPING WITH IBD FLARE-UPS (Q28)

  24. 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. FREQUENCY OF IBD-RELATED SYMPTOMS

  25. INCIDENCE OF BLEEDING (Q29/36)

  26. INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

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

  28. URGENCY OF BOWEL MOVEMENTS (Q32/39)

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

  30. 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 This rises to 55% for women, and falls to 37% for the fully employed 25% of all respondents say that their life is significantly affected People with Crohn’s and ulcerative colitis seem to be equally affected Over half of respondents (54%) say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 44% report that it can be necessary) OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35)

  31. 65% of respondents say they feel stressed or pressured about taking time off work due to IBD – but while similar levels of men and women say they are affected (Q43), only 11% of women are definite that they are not stressed or pressured (compared to 35% of men) Respondents aged 19 – 34 are more likely to say they feel stressed or pressured about taking sick leave, compared to those aged 35 – 54. 23% of all respondents have not had any time off in the past year, due to IBD – but 77% have 33% have had more than 25 days absence (but only 19% in the 35 – 54 years age group say that they have) (Q45). Highest levels of absence are seen among those who are under- or unemployed due to IBD While 55% have not made adjustments to their working life to avoid having to take time off, 45% say that they have done this (rising to 53% among women compared to 31% among men). INCIDENCE OF BEING ABSENT FROM WORK

  32. THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Hospital/emergency department visit (63%) Fatigue, and/or not enough energy to get through the day (56%) Doctor appointment (53%) Cramping or painful abdomen (48%) Men are more likely than women to be absent due to incontinence or fear of incontinence. ATTITUDES IN THE WORKPLACE: (Q47/48) 80% say they have not been the victims of complaints or unfair comments about their performance – leaving I in 5 (20%) reporting that they have (Q47). 76% deny that they have suffered from discrimination in the workplace, but 24% say that they have (Q48) – women are more likely to say this than men, also those who are unemployed due to IBD, and students.

  33. HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49): Only 26% of those who took part in the survey said that their IBD does not affect their behaviour at work, with a further 14% saying ‘not applicable’. The most prevalent effects of IBD seem to be: Being less motivated (39%) Not participating in social activities at work (32%) Being quiet or quieter during meetings (27%) Being irritable at work (24%)

  34. HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 64% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 41% of respondents feel this very strongly. Those most likely to say they have been disadvantaged are either unemployed or under-employed due to IBD, or have a disability. In addition, 49% of respondents say that they have lost or have had to quit a job because of IBD - women (57%) are more likely to have been affected, than men (36%), and respondents with Crohn’s Disease (50%) compared to those with Ulcerative Colitis (41%).

  35. INTIMATE RELATIONSHIPS (Q52/53) 47% of all respondents say that their IBD has prevented them from pursuing intimate relationships  50% of women say this, compared to 42% of men 53% of respondents with Crohn’s Disease compared to 41% with Ulcerative Colitis On the other hand, 36% have not found their IBD has been an impediment in the pursuit of intimate relationships 62% deny that it has caused an intimate relationship to end – but 25% say that it has MAKING FRIENDS (Q54) The majority of respondents (54%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (37%) say that it has (unemployed, students and the 19-34 age group respondents are more inclined to say this).

  36. EDUCATION (Q55) Over half of those who took part in the survey (53%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – rising to 64% among respondents aged 19 – 34. It is an even more prevalent issue for those who have any form of disability and for people who are unemployed due to IBD, as well as students.

  37. This is a personal and significant problem for people with IBD conditions, and levels of concern tend to increase with age. 38% of respondents claim that other people sometimes joke about their frequent need to go to the toilet In particular: 76% Worry about the ready availability of toilets whenever they go somewhere new 78% Frequently consider the availability of toilets when they plan to attend something To help them to deal with going out, 40% keep a list of clean, accessible toilets and consider this when they leave home – this is an approach that is used by men, in particular, and respondents who are disabled But the easy location of a toilet does not always resolve the problem: 31% of respondents say they have had to be rude to people at times in order gain access to a toilet – this is far more likely to be an issue for those not in full employment AVAILABILITY OF TOILETS (Q56)

  38. EFFECTS ON SLEEP (Q56) 50% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women even more than men (55% compared to 40%) and those who are in the 19 – 34 age group more than others. Those with Ulcerative Colitis are less inclined to have broken sleep compared to those with other IBD-related conditions.

  39. THE BENEFITS OF BEING IN CONTACT WITH PEOPLE WHO UNDERSTAND WHAT IT’S LIKE TO HAVE IBD Others with a similar condition: (Q57) 60% of respondents claim that the event of meeting someone else with IBD for the first time made them more optimistic. As with so many things, it seems it helps to know that you are not alone! EFCCA and similar patient associations: (Q58 – 60) 37% of respondents have engaged in some way with EFCCA member associations. However, 63% have not done so. (Women are more likely than men to have done so). Importantly, 69% 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.

  40. The most likely ways that people are associated with a member association are : Receiving patient information leaflets from their national IBD association (28%) Signing up to be a member of their national IBD association (22%) Attending local or national patient meetings (17%) Subscribing to newsletters or magazines from their national IBD association (17%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (0.8%) Help their national IBD association in fundraising (3.2%) Become a leader, or join a committee within their national IBD association (4.8%) LEVEL OF INVOLVEMENT WITH A PATIENTS’ ASSOCIATION

  41. 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 CONTACT DETAILS

More Related