US IBD patients required for huge study

* Can the UK have one next?

The Crohn’s & Colitis Foundation of America has opened enrollment for CCFA Partners, which is a comprehensive Internet-based study of thousands of patients with Crohn’s disease or ulcerative colitis (which affects over 1.4 million Americans).

Previously,  research has typically been conducted in small studies at major medical centers, but this initiative aims to partner with 10,000 patients and track their experiences with Inflammatory Bowel Disease (IBD) over time.

The aim is to help researchers better understand the natural history and course of the disease, and in turn allow them to address the issues that patients face.

“The goal of CCFA Partners is to invite patients to help researchers understand how IBD is affecting them,” says Kimberly Frederick, Senior Vice President of Mission at the Crohn’s & Colitis Foundation of America. “We hope to use CCFA Partners to ultimately improve the quality of life for people with IBD.”

Patients who enroll will complete a brief confidential online survey to provide information about their experiences with IBD. Participants will be subsequently contacted via e-mail every three months with information about the study’s progress. Every six months they will be asked to update their disease conditions.

Patients interested in learning more and participating in CCFA Partners can visit http://ccfapartners.org.

Report: Crohn’s, Colitis and Employment – From career aspirations to reality

Crohn’s and Colitis UK (NACC) has published new research about working life for people with IBD  called ‘Crohn’s, Colitis and Employment – From career aspirations to reality‘ (link opens a pdf). The research states, amongst other  findings:

• 68% of people with inflammatory bowel disease (IBD) feel that they have little or no control over their working conditions and a third receive minimal or no support from their employer.
• 78% of respondents worry about managing their symptoms (which can include urgent diarrhea, extreme pain and fatigue) or flare-ups while at work and as a result of their condition,
• a third feel at risk of losing their jobs.
• 52% agree that they work harder to make up for any shortcomings as a result of their condition
• 40% worry that their colleagues or managers think they are not “pulling their weight” at work on occasions.
• Researchers were surprised to note just how many people with IBD soldiered in to work, despite feeling ill (80%).

Employers were surveyed (private sector only) as well and this research showed that 66% of employer responders either admit to being totally unaware of, or only to some extent aware of, the needs of employees with IBD.

The research also showed that young pre-employed people with IBD felt quite daunted by the prospect of gaining their first job – not surprising since many people are diagnosed between the ages of 16 and 29, coinciding with the start of higher education or work.

•  69% feel that their IBD has prevented them from reaching their full educational potential, and
• half have ruled out some career options.
• When thinking about future employment, most (82%) are worried about managing their symptoms; 66% are concerned about not being able to do their work adequately and 65% worry about employer flexibility.

I think that these young people have a point. Draconian working practices that include limiting time to go to the toilet in the private sector such as that alledged by staff who work for employers such as Lidl and the well known toilet monitoring of Call centres would be miserable for anyone with Crohn’s. Realistically there are going to be some careers which are out of bounds for Crohn’s patients who decide to put their health first – but which ones? Well that will probably depend on the individual, their age and their experience – one person’s perfection is another person’s posion.

The recession has increased competition for jobs, apprenticeships and education opportunities – even those industries which use to find it difficult to recruit need look no further than the local job centre to find high calibre candidates. Shrewsbury (county town in the UK, population 70,000) Waitrose just opened and there were 900 applicants for 33 jobs…. competition like this is going to be imtimidating to young people with a chronic health condition – regardless of equal opportunities provisions.

Educationally, there are issues as well. I loved studying my first choice of a biological sciences degree, but I do wish someone had told me that I would be attending lectures 9am – 5pm every day and then working til all hours on coursework – I wonder how much of my colon I sacrificed to my BSc. I envied my fellow students who were studying English at a mere 2 hours of lectures a week – so much more flexible to manage for someone with flaring IBD. True they worked just as much as I did but at least they could read and write independently when sitting on the toilet, or curled up in bed – and who knows, those codeine based pain killers could have produced exceptional creative writing! But again, it depends on the individual – if you know you lack initiative then the discipline of attending a laboratory every day all day will be less stressful than a full week of potentially nothing ahead of you.

I believe that good quality personalised career and educational advice is key – and that is one thing I hope to do with my Blog – so watch this space!!!

Crohn’s and Colitis UK is asking employers to make some sensible “reasonable adjustments” to the working conditions of people with IBD such as easy access to toilets, time for doctor/hospital appointments separate from their holiday allowance and flexible working.

The onus should also be on the health care system and the individual to work with employers to develop a successful working arrangement. As a starting point, check out www.GoodDeskBadDesk.co.uk for a visual demonstration of how employers can make a difference to the working lives of people with Crohn’s Disease or Ulcerative Colitis.

This is another area that I will be exploring on the blog.

To receive a free copy of the Report or the Summary Findings you can email info@crohnsandcolitis.org.uk.

EFCCA “IBD Impact” Survey

Take part in the largest ever survey of IBD patients in Europe! This study is looking at the impact of Crohn’s and Colitis on all aspects of life. The survey is completely anonymous and is being managed by the EFCCA, the European IBD Association. Get a nice cup of tea,  and visit the IBD Impact Survey website to take part. The survey takes 20-30 minutes to complete, and will provide invaluable evidence to influence national and European governments.

Genetics of Inflammatory Bowel Disease Study

I had a routine check up with my crohn’s consultant today at the Royal Shrewsbury Hospital – everything is steady, thank goodness – and at the end of my session I was invited to take part in a research project, which I readily agreed to. The research is being carried out by the genetics department of St Mary’s Hospital in Manchester and has three main aims:

1. To identify the genes important in (IBD) inflammatory bowel disease
2. To see if changes in genes are an important factor in how people with IBD respond to treatment
3. To look at metabolites in the blood to see whether these can tell the researchers why some people develop IBD

I gave a small sample of blood (10 mls) and answered some basic questions about my health – it took about 10 minutes.

This research project is going to take about 5 years and the results will be published in medical health journals and made available to practitioners.

Fingers crossed this research will be able to shed some light on the genetic origins of IBD.

For more information about this study you can contact Dr Bill Newman, Department of Clinical Genetics, St Mary’s Hospital, Hathersage Road, Manchester, M13 0JH tel: 0161 2766264.