SUMMARY, CHALLENGES AND RECOMMENDATIONS
Health Services
• There are significant regional disparities in diagnosis and treatment across and within provinces and territories. It would be worthwhile identifying the areas most in need of attention.
• With declining numbers of gastroenterologists, poor referral practices to IBD specialists will likely be exacerbated.
• Wait times159 for and access to endoscopy are issues which have an impact on the delay
preceding confirmed diagnosis. The recent Survey to Access to GastroEnterology (SAGE) data show that a patient with a high likelihood of severe IBD can expect a total wait time of 126 days. Of these 126 days, patients wait on average 72 days for a consultation and 44 days for a diagnostic endoscopy. Given the target total wait time of 14 days for this disease category, these patients are waiting 16 weeks longer than the recommended wait time target.
Employment Issues
• Crohn’s disease and ulcerative colitis can have long-term impacts on employment prospects, particularly due to the age of onset early in life. These demographic factors also mean that the person may not have built up adequate leave entitlements and pension contributions, in comparison to diseases with later onset where more leave is able to be taken, which can then act to impede dismissal.
• There is poor employment protection against redundancy and demotions due to time required away from work, and reports of job loss due to illness are common.
• The effect of symptoms – fatigue, diarrhea, pain and the secondary effects of medications – are not well understood or accommodated in the workplace.
• There can be poor information and support for employers and employees in relation to IBD.
Support for People with IBD and their Caregivers • There is a need for support for families dealing with a child with IBD, in particular in relation to sibling issues and strain on the parents’ relationship with each other.
• Currently there is no public funding of community-based delivery of support services for people with CD or UC. Foundations raising funds for these efforts are limited and are not active in many parts of Canada.
Research, Ongoing Monitoring and Evaluation
• Currently available treatments for IBD can have substantial side effects contributing to or exacerbating other chronic illnesses such as osteoporosis and arthritis. More research is needed into the ‘cause, care and cure’ of IBD.
• Given the current research funding environment, there are limited resources available to study the underlying causes of disease, build capacity in the IBD research community, and commercialize academic-based discoveries. This will further impede progress towards new and improved treatments for IBD patients and ultimately, towards finding a cure. • Environmental trigger research is a promising area for research efforts – especially when
THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 84
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