United we Stand Page 1 Supported by an educational grant from Abbott Country Report: Israel IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey

United we Stand

Page 1Supported by an educational grant from Abbott

Country Report: Israel

IMPACT Crohn’s and Ulcerative Colitis

Patient Life Impact Survey

First full results – November 2011Country Report - Israel

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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

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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.

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Final Response Rate by Country

Final Response Rate Total = 4995

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RESPONSE RATE

IMPORTANT NOTEThis 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 192 responses were received from IBD patients in Israel.

The most important characteristics of the sample who responded are:

Forms of IBD: • 77% of respondents have Crohn’s • 19% have Ulcerative Colitis

Gender: • 58% of response was from women• 42% of response was from men

Age group: • Majority of responses (44%) were from 19-34 year olds

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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

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Section A : Firstly, we would like to focus on some details of your experience with IBD.

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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 (77% say they have this)

• Women (78%) are slightly more likely to suffer from Crohn’s than men (76%)

• Conversely, male respondents (22%) are slightly more likely to suffer from Ulcerative Colitis than women (17%).

• The under 19 age group appear more likely to suffer with Crohn’s than other forms of IBD (88%), compared to respondents as a whole.

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IBD CONDITIONS AND PEOPLE’S ABILITY TO WORK

Looking at Employment and Disability Status:

The most represented group is Fully Employed (62 responses, 32%):

- 76% have Crohn’s Disease

- 21% have Ulcerative Colitis

25% of the sample are Students (48 responses):



21% of the sample are Disabled (41 responses) and slightly more have Crohn’s Disease:



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BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3)

Being directed to someone who can help seems to happen quickly for most people –

• 61% of respondents saw a specialist within 6 months of their symptoms starting, • 22% 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 age groups on this:

• The under-19 respondent age group are most likely to be diagnosed quickly (72% reported that this happened within 6 months, and 88% within a year)

• Those aged 35 and above have to wait rather longer

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GETTING A DIAGNOSIS (Q2 & 4)

55% 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

38% had to visit at least twice or more, and 14% 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:

• 37% got their diagnosis in less than 6 months

• For another 27% it took 6 months to 1 year

• Younger patients (under 19) seem most likely to get a speedy diagnosis (56% within 6 months)

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GETTING A DIAGNOSIS (Q2 & 4) (continued)

However:

• 8% of respondents say it took 1 – 2 years to get a diagnosis

• This increases to 11% for patients aged 19-34

• Amongst the total sample, 17% had to wait 5 years or more for a diagnosis.

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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:

• 47% are concerned about the long-term effects of steroids on their health

• 44% have joint involvement associated with IBD

• 41% experience side-effects from steroids

• 35% experience skin involvement associated with IBD

• 35% have used steroids for their condition

• 19% keep steroids on hand in case of an IBD flare

• 18% regularly use pain pills to relieve their IBD symptoms

• 5% have complications of surgery such as adhesions, wound infections or pain

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Section B : Health Care

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SATISFACTION WITH THE TREATMENT PLAN: (Q16)

• 65% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 18% say that they are either somewhat or very dissatisfied (7% are very dissatisfied) .

• Satisfaction amongst the under 19 age group is higher (87%), and it is also higher amongst Crohn’s patients (71%) than Ulcerative colitis patients (52%).

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MEDICATION

Only 6% of respondents are not taking any medication currently, 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:

– 38% claim to be taking Aminosalicylates (5-ASA), particularly those with Ulcerative Colitis (57%)

– 39% claim to be taking drugs that affect the immune system

– 21% are taking biologic drugs

– 9% are taking corticosteroids

Using steroids, specifically: (Q5 & 10)

• 41% of participants say they experience side effects from taking steroids– this rises to 44% for men compared to 40% for women

• 47% say they are worried about the impact of steroids on their long-term health, 51% of those with Ulcerative colitis

• Experience of side effects and concerns about long-term effects of steroids are broadly similar regardless of the IBD-related condition of the respondent.

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FREQUENCY OF HOSPITALISATION: (Q8)

• 82% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (32% for 1 – 5 days and 50% for longer than that – with 60% of younger patients having spent 6 days or more in hospital).

• Those with Crohn’s Disease are most likely to have been hospitalised (85%)

• On the other hand, 30% of those with Ulcerative Colitis have not been in hospital (compared to only 15% of those with Crohn’s Disease) - but when they are hospitalised it is more likely to be for longer (59% have been hospitalised for 6 days or more in the past 5 years)

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OPERATIONS: (Q6 & 7)

67% of respondents have not had a surgical operation to treat their IBD or IBD-related problems.

However, 17% have had one operation, 5% have had two operations, and 11% have had 3 or more.

• Fewer (24%) men have had an operation, compared to 38% of women

• Respondents that are disabled are more likely to have had at least one operation (56%) compared to other occupation groups, and especially those in full employment

• Respondents with Crohn’s are more likely than others to have had at least one operation (40% say that they have, compared to 8% that have Ulcerative colitis) and they are also most likely to have had several operations (19% have had more than one).

The majority of people who have had an operation (74%) are very or somewhat satisfied with the outcome – 6% express dissatisfaction. These findings are broadly similar for both men and women, and across all age ranges.

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AT THE CLINIC (Q17 – 24)

90% say that their clinic has a Specialist Gastroenterologist, 31% say they have a Nurse and 30% say they have Family/general physician clinic/service or internal medicine doctor available at their clinic. Younger respondents are more likely than others to say their clinic has a counsellor or psychologist.

Most people (54%) feel they do have adequate access to their IBD professional - however:

• 42% say they do not.

• 57% feel that at their appointment they didn’t get to tell the specialist something that was important

– 31% say this happens sometimes, – 26% say it happens a lot.

• 73% say they wish that the gastroenterologist had asked more probing questions– 44% say they wish this at least 75% of the time

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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 58% of respondents. This is closely followed by Family/general physician clinic/service (50%) and Nurse (11%). The same proportions, with minor differences, apply to all groups.

• Specialist/gastroenterologist (42%) and Family/general physician clinic/service practitioners (40%) are seen as being best at returning calls promptly, followed by Nurses (9%).

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AT THE CLINIC

Giving patients sufficient time at the consultation (Q23)

• 70% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 47% 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 32% who believe that this applies to the Family/general physician clinic/service practitioner.

• Men (more than women) are inclined towards thinking that the Specialist/Gastroenterologists understand the impact better.

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Section C : The IMPACT that IBD has on YOUR Life

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CURRENT STATUS OF DISEASE (Q25)

• At the time of completing the survey, 55% of respondents claimed to be in remission/not flaring (slightly more men than women), whilst 22% had chronically active conditions, and 21% were suffering periodic active flare ups.

• The 35-54 year age group and those who are full employed seem most likely to be in remission, whilst the unemployed and under-employed (due to IBD) seem most likely to have chronically active conditions

• The sub group samples referred to above are quite small, so care is needed in interpretation, but these results seem to indicate a correlation between severity of the condition, and the effect on the individual’s ability to work.

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EXPERIENCE OF PREVIOUS FLARE (Q26)

• A total of 36% 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 15% had experienced one between 1 and 3 months ago – so a total of 33% within the last 3 months as a whole.

• The older age groups seem less likely to have experienced recent flares, along with the fully employed

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NUMBER OF FLARE-UPS EXPERIENCED (Q27)

• 10% of respondents claimed that their condition was always flaring, whilst another 22% 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 41% have experienced between 1 and 3 episodes.

• Those claiming that their condition is always flaring are most likely to be in the 19-34 year, retired, disabled, unemployed groups

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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. At the other end of the scale, only 18% felt that their plans were not really disrupted.

• Women seem more likely than men to have such plans disrupted, along with 19-34 year olds, the unemployed/under-employed groups, and the disabled.

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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.

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INCIDENCE OF BLEEDING (Q29/36)

DURING A FLARE

BETWEEN FLARES

None

44% 74%

At least daily 56%

26%

5 – 7 days a week

28% 5%

Most affected 19-34 year olds, 55 plus, students, ulcerative colitis

sufferers

55 and over

Least affected 35-54 year olds, Crohn’s -

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INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

DURING A FLARE

BETWEEN FLARES

None

11% 40%

At least daily 89%

60%

5 – 7 days a week 52% 11%

Most affected Women, under 35’s No significant differences

Least affected 55 and over No significant differences

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

DURING A FLARE

BETWEEN FLARES

None

6% 22%

At least daily 94%

78%

5 – 7 days a week 71% 32%

Most affected Women Women (slightly more than men), unemployed, under-employed,

indeterminate colitis (only 5 respondents in this group)

Least affected All are affected to a significant degree

No significant differences

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URGENCY OF BOWEL MOVEMENTS (Q32/39)

DURING A FLARE

BETWEEN FLARES

None

13% 37%

At least daily 87%

63%

5 – 7 days a week

59% 16%

Most affected All groups, but women more than men


Least affected No significant differences

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

DURING A FLARE

BETWEEN FLARES

None

7% 38%

At least 1 a day 93%

58%

1-2 a day

13% 31%

5-10 a day 38%

7%

More than 10 a day

17% 4%

Most affected

Women, ulcerative colitis sufferers experience the greatest intensity -along

with unemployed


Less affected No significant differences

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OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35)

Referring back to their most recent experience, when they are between flares:

• 53% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but 47% say that their life is affected (23% say it is significantly affected)

– Perceived adverse effect is seen particularly in the over 55 age group (61%)– The fully employed group seems less affected (31%)

• 57% say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 35% report that it can be necessary)

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Section D : Overall Work IMPACT

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• 54% of respondents say they feel stressed or pressured about taking time off work due to IBD – women (64%) are far more likely to feel this than men (39%)(Q43)

• 29% have not had any time off in the past year, due to IBD – but 71% have

• 19% have had more than 25 days absence (Q45)

• While 55% have not made adjustments to their working life to avoid having to take time off, 45% say that they have done this

– NB 22% of women have opted to go part-time, compared to 8% of men (Q44), whereas 15% of men now do work from home compared to 6% of women who have made this change because of their IBD

INCIDENCE OF BEING ABSENT FROM WORK

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THE PRIMARY REASONS FOR BEING ABSENT, DUE TO IBD (Q46):

• Fatigue, and/or not enough energy to get through the day (55%)

• Doctor’s appointment (46%)

• Cramping or painful abdomen (46%)

• Hospital/emergency department visit (35%)

ATTITUDES IN THE WORKPLACE: (Q47/48)

• 79% say they have not been the victims of complaints or unfair comments about their performance – but 21% report that they have (Q47).

• 79% deny that they have suffered from discrimination in the workplace, but 21% say that they have

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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 those in full employment being the least affected). For the rest the most prevalent effects of IBD seem to be:

1. Not participating in social activities at work (23%)

2. Being less motivated (21%)

3. Being quiet or quieter during meetings (18%)

4. Being irritable at work (12%)

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HOW IBD AFFECTS CAREER PATH, OPPORTUNITIES FOR ADVANCEMENT, INCOME AND/OR EARNING POTENTIAL (Q50/51):

•61% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD - and 40% of respondents feel this very strongly.

•64% of women feel they have been disadvantaged, compared to 57% of men.

•Unsurprisingly, those most likely to say they have been disadvantaged are unemployed or under-employed due to IBD, or have a disability.

•In addition, 43% of respondents say that they have lost or have had to quit a job because of IBD – 49% of women say this (compared to 34% of men), as do 46% who suffer from Crohn’s Disease (compared to 36% with Ulcerative Colitis)

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Section E : Overall Life IMPACT

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INTIMATE RELATIONSHIPS (Q52/53)

• 46% of all respondents say that their IBD has prevented them from pursuing intimate relationships

– 50% of women say this (compared to 40% of men)– Respondents with Ulcerative Colitis are even more inclined to report that it is an issue (56%)

than those with Crohn’s Disease (45%)

• On the other hand, 39% have not found their IBD has been an impediment in the pursuit of intimate relationships, and 67% deny that it has caused an intimate relationship to end.

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 (25% of women say that it has, compared to 19% of male respondents).

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EDUCATION (Q55)

• Just over half of those who took part in the survey (51%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – but it has been less of an issue for those aged 35 – 54 (41%).

• 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.

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AVAILABILITY OF TOILETS (Q56)

• This can be a significant problem for people with IBD conditions, and levels of concern tend to increase with age.

• 23% 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, over 60% of respondents say that they:

• Worry about the ready availability of toilets whenever they go somewhere new (65%)• Frequently consider the availability of toilets when they plan to attend something

(63%)

To help them to deal with going out, • 15% keep a list of clean, accessible toilets and consider this when they leave home .

But the easy location of a toilet does not always resolve the problem: • 17% of respondents say they have had to be rude to people at times in order gain access to a

toilet – women are more likely to say this than men, and it is much more of an issue for respondents with Ulcerative Colitis (35%) than those with Crohn’s Disease (12%).

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EFFECTS ON SLEEP (Q56)

• 38% say that they frequently wake from sleeping as a result of pain from their IBD.

• This problem affects women even more than men (44% compared to 28%) and those who are under- or unemployed more than those who are working full time.

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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 (32%) said that it made them more optimistic, rising to 44% among Students and 42% among respondents with Ulcerative Colitis.

EFCCA and similar patient associations: (Q58 – 60)

• 65% of respondents have engaged in some way with EFCCA member associations.

• 53% 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.

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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 (66%)2. Receiving patient information leaflets from their national IBD association (64%)3. Attending local or national patient meetings (34%)4. Subscribing to newsletters or magazines from their national IBD association (27%)

Very few are likely to

• Become a leader, or join a committee within their national IBD association (3.6%)• Help their national IBD association in fundraising (2.1%)• Become an EFCCA delegate, or work within an EFCCA project team (0%)

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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 [email protected]

• European Federation of ulcerative Colitis and Crohn’s Associations (EFCCA)• Rue Des Chartreux 33-35, Brussels, 1000, Belgium

Documents

United we Stand Page 1 Supported by an educational grant from Abbott Country Report: Israel IMPACT Crohn’s and Ulcerative Colitis Patient Life Impact Survey