Research into Living with IBD
Inflammatory bowel disease (IBD), which mainly includes Crohn’s disease and ulcerative colitis, is more prevalent in Canada than in any other country in the world. Research into the development of IBD and into how to best treat and support people who live with the disease is vigorous and ongoing. Here we present some of the latest findings.
2012 Crohn’s and Colitis Impact Report
As a follow-up to a similar 2008 initiative, the Crohn’s and Colitis Foundation of Canada (CCFC) commissioned a report detailing the current impact of IBD in Canada. The report’s authors conducted comprehensive literature reviews in a number of areas. Their findings are startling. Studies have shown for some time that Canada has the highest prevalence and incidence of IBD in the world, and this new report shows that even more Canadians are now living with IBD. At approximately 233,000, this is a significant increase from the 170,000 Canadians that researchers thought, up until now, had this serious disease.1
IBD is growing and it is hitting Canadian children especially hard. The incidence of IBD in children younger than 10 years of age has been rising significantly since 2001. Approximately 5,900 Canadian children now have IBD.
A conservative estimate of the annual cost of IBD in Canada is $2.8 billion. This does not include the devastating medication costs shouldered by patients who do not have access to innovative, life-changing medications – especially expensive biologic medicines – through public or private insurance. As we have reported before in The Inside Tract®, when an IBD patient is unable to work (or go to school) because of ineffectively treated disease flares, they require more hospital visits, social support, and other services, which also result in significant health care and other government expenses. Sometimes, a family touched by IBD experiences financial ruin because drug insurance programs do not cover their needed medications.
Despite the strong advocacy and awareness efforts of organizations such as the GI Society, the report finds that IBD patients continue to face many of the same challenges: lack of public awareness, late diagnosis, untimely and inequitable access to treatment and medications, poor health service delivery, difficulty obtaining and maintaining meaningful employment, and lack of support systems. Remarkably, despite the increasing gravity of this issue in Canada, there is a serious lack of funds for research.
Impact on Work
Crohn’s and Colitis UK recently commissioned a survey among adults of working age in the UK who have inflammatory bowel disease.2 The results showed that IBD has a significant impact on individuals’ working lives and broader wellbeing. It affects every stage of patients’ careers, from aspirations to career choice and straight through the duration of a career, which often results in premature retirement.
The survey also indicated that most individuals who have IBD still participate in the workforce in spite of their disease and that employers can help by making some easy adjustments in the workplace. The survey authors note the crucial need for public awareness programs directed at employers to help them understand the needs of individuals living and working with IBD. They also note that government-related employment and disability support programs need to be more flexible for IBD patients, whose symptoms may fluctuate over time. Individuals living with IBD want to be active in the workforce and to pursue their career dreams as much as anyone does. IBD does not need to be a professional hindrance in most cases, as long as there is awareness and understanding within government programs, by employers, and in the community. It is important to have the right support programs and adapted working conditions.
Complementary and Alternative Medicine
Medical professionals have expressed some concern in recent years over the increase in complementary and alternative medicine (CAM) and the possible effect it could have on patients’ compliance with the conventional medical therapies that their physicians have prescribed. A new study, published in Alimentary Pharmacology & Therapeutics,3 included 380 adult IBD patients from Toronto who filled out a number of standard questionnaires regarding their heath, including questions related to age, gender, employment, education, marital status, IBD type and disease history, quality of life, patient trust in physician, conventional IBD medications and treatments, and use of CAM.
Fifty-six percent of the participants reported using complementary and alternative medicine, which included probiotics, fish oil, naturopathy, massage/relaxation, acupuncture, homeopathy, Chinese herbal medicine, aromatherapy, and hypnosis. The most popular alternative medicine was probiotics (53% of participants), followed closely by fish oil (50%). CAM users were more likely to be younger at time of diagnosis, to have a higher level of education, and to have had more adverse disease effects than the non-CAM users. Their reasons for turning to alternative therapies included use of ineffective conventional medications (reported by 40%) in the past, the perception that alternative medicine may be safer than conventional IBD drugs, and a feeling of having more control over the disease.
There was no association between the use of alternative medicines and adherence to conventional treatment. Most (81%) of the study participants, both CAM and non-CAM users, reported complete trust in their gastroenterologist, and the researchers say this study indicates that CAM is not associated with any decline in patients’ adherence to conventional IBD medications. However, only 34% of the CAM users reported that they actually discussed their use of alternative therapies with their gastroenterologist before using it, suggesting that physicians should proactively ask their IBD patients about their alternative therapy use when they evaluate them.
If you’re a patient with IBD, take the initiative to discuss any CAM use with your family doctor and gastroenterologist.
Diagnostic Medical Radiation
In The Inside Tract Issue #178, we mentioned the results of a symposium in Alberta where specialists discussed the use of ultrasound rather than CT scans when possible, to monitor the disease activity of Crohn’s disease patients to lessen both the financial burden of CT scans and patients’ exposure to radiation. A new meta-analysis of recent studies that have estimated the exposure IBD patients experience due to diagnostic medical radiation reinforces the Calgary physicians’ recommendations.4 This new analysis looked mainly at six recent studies, which included data on high radiation exposure among IBD patients. A standard measurement for potentially harmful levels of radiation is >50mSv. The researchers found that 11.1% of Crohn’s disease participants in the studies and 2% of the ulcerative colitis participants had been exposed to high levels of diagnostic medical radiation.
It is important to note, however, that the researchers pulled almost all of this data from hospitals, which likely represents patients who generally have more frequent or severe disease activity. The main risk factors associated with high levels of radiation exposure were previous IBD-related abdominal surgery and the use of corticosteroids. The researchers strongly recommend improved systems for documenting patients’ cumulative exposure to diagnostic medical radiation, as well as strategies for reducing this exposure, particularly through increased use of ultrasound as an alternative to CT scan when possible. The study authors also suggest, however, that additional research is needed to determine whether high levels of radiation exposure actually leads to cancer in IBD patients.
It Matters Where You Live
A large study involving nearly 250,000 female nurses in the United States, followed for more than 20 years, showed a relationship between geographical location, specifically latitude, with risk for developing Crohn’s disease or ulcerative colitis.5 Every two years during the study, the participants completed lifestyle questionnaires that asked them to give their home residence at birth, age 15, and age 30. The researchers categorized the women’s US locations into three tiers: southern, middle, and northern. They found that the participants’ risk for developing IBD decreased if they lived in southern areas and increased if they lived in particularly northern regions. Studies in Europe have shown similar results. Increased vitamin D absorption through exposure to sunny climates is the leading suspected cause for this association. Previous studies have shown a link between vitamin D deficiency and increased risk for IBD. (Most recently, we described the role of vitamin D in IBD in The Inside Tract, Issue #176.)
One Piece at a Time
With each new study the mystery of IBD, a devastating disease affecting about 233,000 Canadians, is further uncovered, giving patients hope that one day we will learn how and why this disease develops, which might lead to prevention and possibly even a cure.