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Gut responses — counting the costs of IBD

The financial burden of IBD is high for Irish patients, ranging from €1,564 for public patients to €3,111 for private patients (including prescriptions), a survey of over 600 Irish IBD patients has revealed.

The Irish Society for Colitis and Crohn’s disease (ISCC) released the results of the largest ever study into issues affecting Irish people living with IBD — ulcerative colitis and Crohn’s disease — during the ISG Winter Meeting.

Of those who responded, 28 per cent classed their disease as mild, 48 per cent as moderate and 24 per cent as severe. Over a third (39 per cent) reported that the symptoms of IBD had significantly affected their lives.

Just under a third (31 per cent) of respondents were being treated in the private system, while 49 per cent were being treated solely in the public system. Just over a third (35 per cent) had a medical card, while 3 per cent had a GP visit card and 1 per cent had a discretionary medical card.

Almost one-third of people can wait over a year before receiving a formal diagnosis of Crohn’s disease or colitis, the survey highlighted. Typically, IBD patients see their GP three times per year and their consultant two-to-three times a year. On average, Irish IBD patients have spent three-to-four days in hospital because of their symptoms, while 31 per cent have undergone IBD-related surgery. Prior to diagnosis, 19 per cent of those with severe disease reported attending an emergency department three or more times.

Workplace

Over half (56 per cent) of respondents said that IBD had negatively affected their income. Based on the CSO 2014 average wage, the average earnings lost by IBD patients equates to approximately €2,320, rising to an average of €4,670 for those with severe illness.

The Gut Responses — Irish Crohn’s and Colitis Workplace Experiences study shows the high level of fear among those in the workplace when it comes to sharing details of their illness — with only 30 per cent of people confiding in their boss about their illness. 

The majority of respondents (71 per cent) admitted feeling stressed or pressured when they have to take sick leave or explain the reason for time off, with those who have mild-to-moderate Crohn’s or colitis missing an average of 17-to-18 days, rising to 33-to-34 days among those with severe disease each year because of their condition.

Other findings include that 39 per cent of people living with IBD have nine or more bowel movements in a typical day when their condition is in flare. The overwhelming majority of those surveyed (94 per cent) said that the location and availability of toilets are deciding factors for meetings and work events that take place.

Three-quarters (75 per cent) of those surveyed reported that there was inadequate access to a psychologist/counsellor to help ease the emotional and psychological stress of living with Crohn’s or colitis and managing it within the workplace.

Dr Aoibhlinn O’Toole, Consultant Gastroenterologist, Beaumont Hospital, Dublin, commenting on the survey findings, said: “While the results from the survey may seem quite shocking, it’s only when a study like this is carried out that positive moves can be made to make the life of someone with Crohn’s or colitis that little bit more manageable.

“Almost half (46 per cent) of people report having limited or no access to a nurse who specialises in Crohn’s and colitis care. We need to strive to reduce this number so that all patients have equal access to appropriate care and support.”

Ms Tricia McArdle, ISCC Chairperson, submitted the findings of the survey at the meeting. She said that the findings highlight the need for more support and information for those living with IBD, particularly those struggling to manage their illness in the workplace.

‘‘While there is support out there for the 20,000 people living with Crohn’s and colitis in Ireland, the ISCC felt that the results of this survey highlighted the need for the development of practical materials for those living with Crohn’s and colitis, specifically dealing with the issue of managing your illness in the workplace and also for students who move away from home for the first time and may be nervous about managing the condition alone.”

The ISCC, in partnership with biopharmaceutical company AbbVie, which also supported the survey, have developed practical resources to aid in the day-to-day life of IBD patients and also for those who employ people living with the conditions.

The information booklets — A Guide for Employees, A Guide for Employers, and A Guide for Students — have been produced to provide practical support and advice for those in this situation. These booklets are available now to download from the ISCC website, www.iscc.ie/living.

“The development of the new educational materials by the ISCC are most welcome, and will certainly aid in easing the stress and anxiety felt by those living with Crohn’s and colitis for the future,’’ Dr O’Toole said.

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