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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 - Slovenia. Survey Solutions was commissioned by EFCCA to conduct the IMPACT survey in late September 2010

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IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey

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

  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. A total of 102 responses were received from IBD patients in Slovenia. The most important characteristics of the sample who responded are: Forms of IBD: 62% of respondents have Crohn’s 32% have Ulcerative Colitis Gender: 62% of response was from women 39% of response was from men Age group: Majority of responses (87%) were from 19-54 year olds 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) Male respondents (36%) are slightly more likely to suffer from Ulcerative Colitis than women (29%). The 35-54 age group (64%) appear slightly more likely to suffer with Crohn’s than those in the 19-34 age group (59%). MOST COMMON FORMS OF IBD (Q1)

  8. Looking at Employment and Disability Status, the most represented group is Fully Employed (41 responses) with 66% having Crohn’s Disease and 24% having Ulcerative Colitis. Other groups are rather too small to be compared, with response numbers ranging from 2 to 23. IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK

  9. Being directed to someone who can help seems to happen reasonably quickly for most people – 60% of respondents saw a specialist within 6 months of their symptoms starting, 23% did so within 6 months to a year thus, 83% 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 6 months of their symptoms starting - this applies to 67% of men, but only 56% of women. Those aged 19 – 34 are more likely to be seen most quickly (66% within 6 months and 90% within a year). BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3)

  10. 89% 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 49% had to visit at least twice or more, and 19% claim that it took 5 or more visits to be diagnosed In terms of speed of diagnosis, 64% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD: 29% got their diagnosis in less than 6 months For another 34% it took 6 months to 1 year Women (32%) were slightly more likely than men (26%) to be diagnosed within 6 months Older patients (55 and over) seem least likely to get a speedy diagnosis (only 17% within 6 months, and 34% within a year) GETTING A DIAGNOSIS (Q2 & 4)

  11. However: 14% of respondents say it took 1 – 2 years to get a diagnosis Amongst the total sample, 6% had to wait 5 years or more for a diagnosis. 77% of people with Ulcerative Colitis received their diagnosis within a year, and 48% were diagnosed within 6 months Rather fewer of those with Crohn’s Disease were diagnosed within a year (57%) 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: 60% are concerned about the long-term effects of steroids on their health 54% have joint involvement associated with IBD 53% experience side-effects from steroids 35% have used steroids for their condition 35% experience skin involvement associated with IBD 22% keep steroids on hand in case of an IBD flare 21% regularly use pain pills to relieve their IBD symptoms 6% have complications of surgery such as adhesions, wound infections or pain IMPORTANT ATTRIBUTES OF IBD PATIENTS (Q5):

  13. 80% 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 (7% are very dissatisfied) Men are more satisfied than women (86% versus 76%) Those who are least satisfied are respondents aged under 35. SATISFACTION WITH THE TREATMENT PLAN: (Q16)

  14. 17% of respondents are not taking any medication currently (Q15), and very few respondents (2%) say they do not know what they are taking now (Q14). The medicine most likely to be taken at the moment: 53% claim to be taking Aminosalicylates (5-ASA) 24% are taking biologic drugs 26% claim to be taking drugs that affect the immune system 16% are taking corticosteroids Using steroids, specifically: (Q5 & 10) 53% of participants say they experience side effects from taking steroids 60% say they are worried about the impact of steroids on their long-term health, with women being more concerned than men. Concerns about the long-term effects of steroids are also reported by a higher proportion of those with Ulcerative Colitis, compared with those who suffer from Crohn’s Disease MEDICATION

  15. 68% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (41% for 1 – 5 days and 27% for longer than that). Men (75%) are more likely than women (66%) to have been hospitalised Those with Crohn’s Disease are most likely to have been hospitalised (84%), but the majority (59%) will have spent no more than 1 – 5 days in hospital during the past 5 years, compared to respondents with Ulcerative colitis where only 37% have been hospitalised, but 28% for more than 5 days. FREQUENCY OF HOSPITALISATION: (Q8)

  16. 58% of respondents have not had a surgical operation to treat their IBD or IBD-related problems, rising to 63% of women, and 90% of respondents with ulcerative colitis. Of the remaining respondents, 19% have had one operation, 11% have had two operations, and 12% have had 3 or more. Females are less likely to have had an operation (63%) compared to males (50%) Respondents with Crohn’s are more likely than others to have had at least one operation (58% say that they have) and they are also most likely to have had several operations (33% have had more than one). The majority of people who have had an operation (83%) are very or somewhat satisfied with the outcome – whilst 7% express dissatisfaction. Women seem more satisfied (87%) than men (79%) OPERATIONS: (Q6 & 7)

  17. 94% say that their clinic has a Specialist Gastroenterologist 40% say they have a Nurse who understands or specialises in IBD 24% have a Family/general physician clinic/service or internal medicine doctor. Most people (59%) feel they do have adequate access to their IBD professional - however: 33% say they do not. 64% feel that at their appointment they didn’t get to tell the specialist something that was important 36% say this happens sometimes, 28% say it happens a lot. 79% say they wish that the gastroenterologist had asked more probing questions 36% say they wish this at least 75% of the time 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 56% of respondents. This is followed by Specialist/Gastroenterologist service practitioners (53%). However, men are more likely to consider the Specialist/Gastroenterologist service practitioners as offering the best range of options for getting in touch (59%). Family/general physician clinic/service practitioners (62%) and Specialist/gastroenterologist (54%) are also seen as being best at returning calls promptly. AT THE CLINIC

  19. Giving patients sufficient time at the consultation (Q23) 67% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 56% 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 34% believe that this applies to the Family/general physician clinic/service practitioner, and 12% who think it is the Nurses. AT THE CLINIC

  20. At the time of completing the survey, 68% of respondents claimed to be in remission/not flaring (slightly more men than women), whilst 19% had chronically active conditions, and 13% were suffering periodic active flare ups. Those in the 19-34 year age group were slightly more likely to be in remission currently than older groups, as were those with Crohn’s Disease, and those that are fully employed. CURRENT STATUS OF DISEASE (Q25)

  21. A total of 40% of the sample claim that their last flare had been over 12 months ago. By contrast, 8% had experienced a flare in the previous month, and a further 14% had experienced one between 1 and 3 months ago – so a total of 22% (slightly more than 1 in 5) within the last 3 months as a whole. Women (29%) seem more likely than men (11%) to have experienced a flare in the past 3 months The 19-34 age group seem more likely to have experienced a more recent flare, as well as those with Crohn’s disease. EXPERIENCE OF PREVIOUS FLARE (Q26)

  22. 6% of respondents claimed that their condition was always flaring (8% of women, 3% of men), whilst another 15% claimed that they had experienced no flare at all in the past two years. A further 9% claim to have experienced at least 6 episodes in the past two years, whilst 60% have experienced between 1 and 4 episodes. NUMBER OF FLARE-UPS EXPERIENCED (Q27)

  23. 56% 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 1 in 4 survey respondents (26%) felt that their plans were not really disrupted (increasing to 33% of men) 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: 57% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but 43% say that their life is affected 22% of all respondents say that their life is significantly affected (increases to 34% of people with ulcerative colitis) 72% say they hardly ever have to cancel or reschedule an engagement or meeting because of their IBD (but 25% report that it can be necessary) OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35)

  31. 52% of respondents say they feel stressed or pressured about taking time off work due to IBD – those in full employment are less affected (Q43) 30% have not had any time off in the past year, due to IBD – but 70% have 28% have had more than 25 days absence While 61% have not made adjustments to their working life to avoid having to take time off, 39% say that they have done this 28% of women have opted to go part-time, compared to 17% of men (Q44) INCIDENCE OF BEING ABSENT FROM WORK

  32. THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46): Doctor’s appointment (53%) Hospital/emergency department visit (50%) Fatigue, and/or not enough energy to get through the day (41%) Cramping or painful abdomen (41%) ATTITUDES IN THE WORKPLACE: (Q47/48) 64% say they have not been the victims of complaints or unfair comments about their performance – but 36% report that they have (Q47). Women are more likely than men to say this has happened (41% compared to 29%). The issue is slightly more prevalent among people with Crohn’s Disease compared to those with Ulcerative Colitis. 72% deny that they have suffered from discrimination in the workplace, but 28% say that they have (Q48) – again, women (32%) are more likely to say this than men (21%)

  33. 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 (with those in full employment being the least affected). For the rest (69%) the most prevalent effects of IBD seem to be: Being less motivated (29%) Being irritable at work (28%) Not participating in social activities at work (23%)

  34. HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51): 55% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 29% of respondents feel this very strongly. 64% of respondents deny that they have lost or quit a job due to their IBD – but 23% say this has happened (rising to 28% among women, compared to only 13% of the men).

  35. INTIMATE RELATIONSHIPS (Q52/53) 35% of all respondents say that their IBD has prevented them from pursuing intimate relationships  39% of women say this, compared to 28% of men Respondents aged 35 or more are much more likely to report that it is has been a problem, compared to younger respondents On the other hand, 57% have not found their IBD has been an impediment in the pursuit of intimate relationships 70% deny that it has caused an intimate relationship to end – but 17% say that it has MAKING FRIENDS (Q54) The majority of respondents (69%) say that IBD has not got in the way of their ability to make or keep friends, But a significant proportion (23%) say that it has – men (29%) are more inclined to say this than women (20%).

  36. EDUCATION (Q55) 50% 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 Respondents with Crohn’s Disease are more likely to claim they have been affected than those with Ulcerative Colitis (52% compared to 40%)

  37. This is a significant problem for people with IBD conditions, and levels of concern tend to increase with age. 15% of respondents claim that other people sometimes joke about their frequent need to go to the toilet 58% worry about the ready availability of toilets whenever they go somewhere new 57% frequently consider the availability of toilets when they plan to attend something 23% keep a list of clean, accessible toilets and consider this when they leave home – this is an approach that is favoured by women, more than men. 8% of respondents say they have had to be rude to people at times in order gain access to a toilet AVAILABILITY OF TOILETS (Q56)

  38. EFFECTS ON SLEEP (Q56) 27% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects women more than men (33% compared to 15%) and those who are aged 35 and over.

  39. 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 made the majority (65%) more optimistic, with benefits being seen across all groups of respondents.. EFCCA and similar patient associations: (Q58 – 60) The majority of respondents (79%) have engaged in some way with EFCCA member associations. However, 21% have not done so. Importantly, 71% 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 : Signing up to be a member of their national IBD association (77%) Attending local or national patient meetings (53%) Receiving patient information leaflets from their national IBD association (52%) Subscribing to newsletters or magazines from their national IBD association (32%) Very few are likely to Become an EFCCA delegate, or work within an EFCCA project team (2.9%) 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

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