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NON-FINANCIAL COSTS


INTRODUCTION


This report has explored the financial costs associated with IBD, from the viewpoint of the individual with IBD, the health care system, and society. However, beyond out-of-pocket expenses, individuals with IBD also experience tremendous additional personal cost, that is, the burden of having a disease. There are many difficulties associated with IBD. There are ongoing medical issues to contend with, from the experience of symptoms (pain, diarrhea, fatigue) to the worry about how the course of the disease will affect overall quality of life. The fluctuating nature of IBD can make it very difficult to plan for the future. In particular, there is reduced quality of life from living with the disease, as well as reduced choices with respect to career, travel and other personal options. Another aspect that is not traditionally “costed” is the value of non-work time which is spent being ill or dealing with illness. This includes leisure time for working-age people, but also all of the time for non-working people (such as students, retirees, and homemakers).


It is possible to calculate a dollar cost for the individual’s burden of suffering from a disease, and it has been done when estimating the burden of an illness (both for IBD and for other diseases).111,112


However, in order to convert a decrease in quality of life into a dollar cost, it


is necessary to place a price on the value of life, health and suffering. This is a controversial topic, and it can be difficult to come up with an acceptable solution. Also, when costs are assigned for a decrease in quality of life, these costs are generally very high, and in fact can dwarf the actual financial costs of a disease. For example, researchers in Australia estimated the financial cost of IBD to be almost $500 million, but the additional cost of the quality of life decrease was $2.7 billion (Australian dollars).111


Given that Australia is a medium prevalence


IBD country with 20 million people compared to the high prevalence reported in Canada with a population of 32 million, a conservative estimate for the quality of life cost in Canada (based on the report from Crohn’s and Colitis Australia) is $4 billion (CAD). Rather than debate the price of health, this section of the Impact of IBD Report describes the impact of IBD to the individual’s health, and will not attempt to further quantify the burden with a dollar amount.


QUALITY OF LIFE


Quality of life can be measured using questionnaires, which people complete with respect to their current state of health. Sometimes the questions might be symptom-related, such as: Do you often have diarrhea? How often are you tired? Quality of life questions that relate to health might be: How do you feel about your state of health? Does your health prevent you from physical activities? From social activities? More general questions about quality of life might be: How often do you feel sad? Are you often worried about the future?


There are three types of quality of life questionnaires that will be discussed: disease-specific, generic, and utility questionnaires. Table 1 briefly states these three types of questionnaires, with more detail in each subsequent section.


THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 69


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