united we stand page 1 this project is supported by an educational grant from abbott country report...

United we Stand

This project is supported by an educational grant from Abbott

Country Report - Italy

IMPACT Crohn’s and Ulcerative Colitis

Patient Life Impact Survey

First full results – November 2011Country Report - Italy

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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.

• Italy was one of the highest-responding countries to this survey, with 1016 responses.

The most important characteristics of the sample who responded are:

Forms of IBD: • 50% of respondents have Crohn’s • 47% have Ulcerative Colitis

Gender: • 48% of response was from women• 52% of response was from men

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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 and Ulcerative Colitis are almost evenly split as the most prevalent of the inflammatory bowel conditions affecting respondents to the survey (50% and 47% respectively)

• Women (50%) are slightly more likely to suffer from Ulcerative Colitis than men (44%)

• Conversely, male respondents (53%) are slightly more likely to suffer from Crohn’s Disease than women (47%).

• The 35-54 age group appear more likely to suffer with Crohn’s than other forms of IBD, compared to respondents as a whole (53%).

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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 (372 responses, 53% of the country sample) with 47% having Crohn’s Disease and 49% 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 some people to do so and:

• Of the respondents who say they are under-employed due to IBD,

– 63% have Crohn’s Disease and

– 37% have Ulcerative Colitis

• Of the who say they are un-employed due to IBD,

– 49% have Crohn’s Disease and

– 42% have Ulcerative Colitis

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BEING DIRECTED TO SOMEONE WHO CAN HELP: (Q3)

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

• 55% of respondents saw a specialist within 6 months of their symptoms starting, • 23% did so within 6 months to a year • thus, 78% 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 58% of men, but only 51% of women.

• The under-19 respondent age group (a very small group of only 18 respondents) are most likely to be diagnosed quickly (89% reported that this happened within 6 months, and 95% within a year)

• Those aged 55 and above seem to wait the longest.

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GETTING A DIAGNOSIS (Q2 & 4)

57% 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

40% had to visit at least twice or more, and 15% claim that it took 5 or more visits to be diagnosed

In terms of speed of diagnosis, 60% of respondents claimed that they received a final diagnosis within a year of recognising their symptoms as relating to IBD:

• 38% got their diagnosis in less than 6 months

• For another 22% it took 6 months to 1 year

• Older patients (55 and over) seem least likely to get a speedy diagnosis (only 29% within 6 months, and 50% within a year)

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GETTING A DIAGNOSIS (Q2 & 4) (continued)

However:

• 13% of respondents say it took 1 – 2 years to get a diagnosis

• Amongst the total sample, 14% had to wait 5 years or more for a diagnosis.

• 73% of people with Ulcerative Colitis received their diagnosis within a year, and 52% were diagnosed within 6 months

• Rather fewer (49%) of those with Crohn’s Disease were diagnosed within a year, and only 27% received a diagnosis within 6 months

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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:

• 46% have used steroids for their condition

• 42% have joint involvement associated with IBD

• 40% are concerned about the long-term effects of steroids on their health

• 32% keep steroids on hand in case of an IBD flare

• 25% experience side-effects from steroids

• 23% experience skin involvement associated with IBD

• 13% have complications of surgery such as adhesions, wound infections or pain

• 10% regularly use pain pills to relieve their IBD symptoms

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Section B : Health Care

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SATISFACTION WITH THE TREATMENT PLAN: (Q16)

• 64% of all respondents say that they are very or somewhat satisfied with their treatment plan, whilst 12% say that they are either somewhat or very dissatisfied (only 3% are very dissatisfied)

• Men are slightly more satisfied than women (66% versus 62%)

• Those who are least satisfied are the smaller group of respondents who are unemployed due to IBD (35% negative response).

• Lower levels of satisfaction are also found in respondents that are seeking disability and Students (23%).

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MEDICATION Only 6% of respondents are not taking any medication currently (Q15), and very few respondents (less than 1%) say

they do not know what they are taking now (Q14).

The medicine most likely to be taken at the moment:

– 68% claim to be taking Aminosalicylates (5-ASA)

– 23% claim to be taking drugs that affect the immune system

– 17% are taking corticosteroids

– 15% are taking biologic drugs

Using steroids, specifically: (Q5 & 10)

• 46% of respondents say they have used steroids in the past year, this increases in respondents that are seeking disability (66%) and those un-employed due to IBD (64%)

• 40% say they are worried about the impact of steroids on their long-term health

• 32% keep steroids on hand in the event of a flare

• 25% of participants say they experience side effects from taking steroids, this rises to 44% for those un-employed due to IBD and 29% for men

• Side effects and concerns about long-term effects of steroids are reported by a higher proportion of those with Ulcerative Colitis, compared with those who suffer from Crohn’s Disease

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FREQUENCY OF HOSPITALISATION: (Q8)

• 81% of respondents have been hospitalised in the past 5 years, because of their IBD-related condition (34% for 1 – 5 days and 46% for longer than that).

• Women (49%) are more likely than men (42%) to have been hospitalised for more than 5 days

• Those with Crohn’s Disease are most likely to have been hospitalised (87%), but the majority (58%) will have spent no more than 1 – 5 days in hospital during the past 5 years

• However, of the respondents with Ulcerative colitis 64% spent 6 -10 days in hospital

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OPERATIONS: (Q6 & 7)

• 64% 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 14% have had 3 or more.

• It was noticeable that 5% of all respondents have had 5 or more operations.

• Those who are students are least likely to have had an operation

• Respondents with Crohn’s are more likely than others to have had at least one operation (61% say that they have) and they are also most likely to have had several operations (34% have had more than one).

• The majority of people who have had an operation (66%) are very or somewhat satisfied with the outcome – but 9% express dissatisfaction. Women (72%) seem more satisfied than men (62%).

• Those with Crohn’s Disease report slightly lower levels of satisfaction than those with Ulcerative Colitis.

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AT THE CLINIC (Q17 – 24)

• 92% say that their clinic has a Specialist Gastroenterologist• 33% say they have a Nurse who understands or specialises in IBD

Most people (73%) feel they do have adequate access to their IBD professional - however:

• 22% say they do not.

• 53% feel that at their appointment they didn’t get to tell the specialist something that was important

– 25% say this happens sometimes, – 28% say it happens a lot.

• 72% say they wish that the gastroenterologist had asked more probing questions– 33% 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 80% of respondents. This is followed by Family/general physician clinic/service (20%).

• Specialist/gastroenterologist (69%) and Family/general physician clinic/service practitioners (15%) are also seen as being best at returning calls promptly.

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AT THE CLINIC

Giving patients sufficient time at the consultation (Q23)

• 79% of respondents say that their specialist/gastroenterologist service is best at giving them sufficient time, and 17% say that their family/general physician clinic/service does this.

Understanding how IBD impacts on your life (Q24)

• 74% of respondents feel that Specialist/Gastroenterologists best understand the impact that IBD has on their lives, while 16% believe that this applies to the Family/general physician clinic/service practitioner.

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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, 56% of respondents claimed to be in remission/not flaring whilst 20% had chronically active conditions, and 21% were suffering periodic active flare ups.

• Men were slightly more likely to claim their condition was chronically active (22% compared to 18% for women)

• Women were slightly more likely to have periodic flare ups (22% compared to 19% for men)

• Amongst the groups who were unemployed or under-employed due to IBD, 40% claimed a chronically active condition

– By contrast this falls to 16% for the fully employed group

• Amongst the fully employed group, 58% claimed to be in remission

• On the basis of these differences, there does appear to be a correlation between severity of the condition, and the effect on the individual’s ability to work.

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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, 15% had experienced a flare in the previous month, and a further 17% had experienced one between 1 and 3 months ago – so a total of 32% within the last 3 months as a whole.

• Men seem more likely (36%) to have experienced a flare in the past 3 months than women (where it applies to 26%)

• The 19-34 age group seem more likely to have experienced a more recent flare (39% in the last 3 months), along with those with ulcerative colitis (35%), and the unemployed (43%)

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NUMBER OF FLARE-UPS EXPERIENCED (Q27)

• 12% of respondents claimed that their condition was always flaring (9% for women, 16% for men), whilst 17% claimed that they had experienced no flare at all in the past two years.

• A further 8% claim to have experienced at least 7 episodes in the past two years, whilst 54% have experienced between 1 and 4 episodes.

• Those claiming that their condition is always flaring are more likely to be men than women, and in the group that is unemployed due to their IBD (41%).

• Chronic flaring is also more likely amongst Retired and the three Disability groups, and those who are under-employed, but less likely amongst the fully employed (where it falls to 8%)

Once again, this seems to indicate a clear cause-and-effect relationship between severity of the IBD condition, and ability to work.

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COPING WITH IBD FLARE-UPS (Q28)

• 51% 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 59% of all men, and falls to 43% of women.

• At the other end of the scale, only 23% felt that their plans were not really disrupted.

• The 19-34 age group were most likely to have plans disrupted (61% say at least a 50% likelihood), along with those who are unemployed (87%) or under-employed (69%) or disabled/seeking disability status, which is consistent with the fact that these are probably the people with the most chronic conditions.

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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

34% 68%

At least daily 66%

32%

5 – 7 days a week

34% 7%

Most affected 19-34 year olds, ulcerative colitis

Unemployed

Least affected Crohn’s, retired Crohn’s

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INCIDENCE OF ABDOMINAL CRAMPING PAINS (Q30/37)

DURING A FLARE

BETWEEN FLARES

None

18% 45%

At least daily 82%

55%

5 – 7 days a week

40% 11%

Most affected Men, 19-34 year olds, un- or under-employed

Men, unemployed, under-employed

Least affected 55 and over Fully employed, retired

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

DURING A FLARE

BETWEEN FLARES

None

6% 21%

At least daily 94%

79%

5 – 7 days a week

63% 30%

Most affected Men, underemployed, unemployed

Men, unemployed, under-employed,

Crohn’s Least affected Retired Fully employed

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URGENCY OF BOWEL MOVEMENTS (Q32/39)

DURING A FLARE BETWEEN FLARES

None 8% 27%

At least daily 92% 73%

5 – 7 days a week 58% 18%

Most affected Affects all groups Unemployed, under-employed

Least affected - Students

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

DURING A FLARE

BETWEEN FLARES

None

5% 31%

At least 1 a day 93%

66%

1-2 a day

17% 36%

5-10 a day 31%

8%

More than 10 a day

13% 2%

Most affected

Affects all groups similarly

Disabled, unemployed, under-employed

Least affected - 35 and over

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OTHER IMPACTS OF IBD BETWEEN FLARES (Q34/35)

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

• 47% say their life is only slightly (or not at all) impacted by their IBD symptoms, compared to people without IBD – but more (53%) say that their life is affected (rising to 59% of men)

• 22% of all respondents say that their life is significantly affected

• 81% of those who are unemployed as a result of their IBD claim that their lives are affected by their IBD

• Over half of respondents (53%) say they hardly ever have to cancel or reschedule an engagement or meeting because of their bowel disease (but 42% report that it can be necessary)

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Section D : Overall Work IMPACT

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• 64% of respondents say they feel stressed or pressured about taking time off work due to IBD – those aged 55 or more are least affected, also respondents aged under 19 (Q43)

• 29% have not had any time off in the past year, due to IBD – but 71% have – 35% of women have not had to take any time off due to IBD, compared to 24% of men

• 19% have had more than 25 days absence (rising to 24% among those in the 19 – 34 years age group and especially among respondents who are under- or unemployed (Q45).

– 24% of men have had more than 25 days absence, compared to 15% of women

• While 62% have not made adjustments to their working life to avoid having to take time off, 38% say that they have done this

– Only 27% of women have made adjustments, compared to 47% of men (Q44).– Respondents who are fully employed are least likely to have made any adjustments

INCIDENCE OF BEING ABSENT FROM WORK

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

• Doctor’s appointment (52%)

• Fatigue, and/or not enough energy to get through the day (46%)

• Cramping or painful abdomen (41%)

• Hospital/emergency department visit (30%)

ATTITUDES IN THE WORKPLACE: (Q47/48)

• 77% say they have not been the victims of complaints or unfair comments about their performance – but 23% report that they have (Q47). Those who are unemployed due to IBD are most likely to say that this has happened (28%).

• 79% deny that they have suffered from discrimination in the workplace, but 21% say that they have (Q48)

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HOW IBD AFFECTS BEHAVIOUR AT WORK (Q49):

• Only 30% of those who took part in the survey said that their IBD does not affect their behaviour at work. For the rest (70%) the most prevalent effects of IBD seem to be:

1. Being quiet or quieter during meetings (28%)

2. Being less motivated (27%)

3. Being irritable at work (25%)

4. Not participating in social activities at work (21%)

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

52% agree that their prospects have, to a greater or lesser degree, been affected negatively by IBD and 27% of respondents feel this very strongly.

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

In addition, 38% of respondents say that they have lost or have had to quit a job because of IBD (rising to 91% among those unemployed due to IBD, and 81% of those under-employed)

Men (43%) are more likely to have been affected, than women (33%). People with Crohn’s Disease are slightly more likely to have had to quite their job due to IBD, compared to those with Ulcerative Colitis.

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Section E : Overall Life IMPACT

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INTIMATE RELATIONSHIPS (Q52/53)

• 34% of all respondents say that their IBD has prevented them from pursuing intimate relationships

– 38% of men say this, compared to 29% of women

• On the other hand, 48% have not found their IBD has been an impediment in the pursuit of intimate relationships

• 65% deny that it has caused an intimate relationship to end, but 20% say that it has.

MAKING FRIENDS (Q54)

• The majority of respondents (63%) say that IBD has not got in the way of their ability to make or keep friends,

• But a significant proportion (22%) say that it has (those who are unemployed due to IBD are more inclined to say this – 48% say it is an issue for them).

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EDUCATION (Q55)

• Nearly half of those who took part in the survey (46%) feel that their IBD has negatively affected their ability to perform to their full potential in an educational setting – rising to 53% 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 under- or unemployed due to IBD.

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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.

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:• 69% 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, • 19% keep a list of clean, accessible toilets and consider this when they leave home – this is an

approach that is especially favoured by those who are disabled.

But the easy location of a toilet does not always resolve the problem: • 16% of respondents say they have had to be rude to people at times in order gain access to a

toilet

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EFFECTS ON SLEEP (Q56)

• 27% say that they frequently wake from sleeping as a result of pain from their IBD. This problem affects men more than women (33% compared to 21%) and is reported by a higher proportion of respondents who are:

– under- or unemployed due to IBD

– disabled, seeking disability or unable to receive disability status

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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 (39%) said that it made them more optimistic, particularly those who are under-employed due to IBD.

EFCCA and similar patient associations: (Q58 – 60)

40% of respondents have engaged in some way with EFCCA member associations. However, 60% have not done so.

– Women (45%) are more likely to have engaged with an organisation than men (36%)– Respondents aged under 35 are less likely to be engaged than those who are older

Importantly, 70% 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 (34%)2. Receiving patient information leaflets from their national IBD association (33%)3. Subscribing to newsletters or magazines from their national IBD association (29%) 4. Attending local or national patient meetings (26%)

Very few are likely to

• Become an EFCCA delegate, or work within an EFCCA project team (0%)• Become a leader, or join a committee within their national IBD association (1.2%)• Help their national IBD association in fundraising (3.2%)• Volunteer to help their national association (3.5%)

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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

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