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Table 1: Quality of Life Questionnaires Type


Audience


Disease-specific Can only be given to people with the specific disease


Generic Utility Can be given to anyone Can be given to anyone IBD-Specific Quality of Life


Quality of life instruments that focus on a specific disease help us to understand what aspects of a disease are most troubling and what factors impact quality of life for people with the disease of interest. The Inflammatory Bowel Disease Questionnaire (IBDQ) has been the most commonly used quality of life instrument. It can be given to people with either CD or UC. It has been used in many different countries. Researchers around the world have found that quality of life is decreased in people with IBD. Using the IBDQ, it has become clear that quality of life is most strongly impacted by severity of disease.113,114,115


That is, people with more severe


disease have the greatest reduction in quality of life, and people with milder disease have less reduction in quality of life. They have also found that women are more likely to have lower quality of life than men with IBD.114,115


Both CD and UC have a similarly negative impact on


quality of life, and there are no significant differences in quality of life between people with CD and UC.


It is important to note that all people with IBD can have reduced quality of life, even those who do not have symptoms (due to a fluctuating disease, or because their medications have caused a remission). Canadian researchers, using the Manitoba database of individuals with IBD, have done some interesting work comparing people with consistently active versus fluctuating disease. A comparison of lifetime prevalence suggest higher rates of panic, generalized anxiety and OCD and major depression and lower rates of social anxiety and bipolar disorders in the IBD sample than in national samples.116


However, even those without


symptoms have psychological distress (stress, anxiety, fear about pain, and worry about the consequences of their disease).117,118


They have confirmed the results of other international


studies that found a higher rate of depression and anxiety disorders in people with IBD.119 Poor sleep quality is very common in people with IBD, whether or not their disease is active.120 Other researchers have found similar results, that quality of life is driven most by disease activity, but is followed by psychological distress – common to those with symptoms and those without. On the other hand, factors such as personality or sociodemographic characteristics (age, income, education, ethnicity, etc.) are not important to quality of life in IBD, although they are often relevant for other diseases.121


Health care professionals may not fully appreciate the impact that the disease and its symptoms may have on patient quality of life. A Canadian/European survey in UC found that physicians significantly underestimated whether UC disrupted their patients’ quality of life, compared to what their patients reported. Physicians did not fully appreciate which symptoms


THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 70


Primary Advantage Very informative within the disease


Allows for comparison between diseases


Allows for numerical comparison between diseases


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