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INDIRECT COSTS


CAREGIVERS


Caregivers are people who provide informal (unpaid) care to others who need assistance for health reasons. Caregivers may take time off work to accompany people to medical appointments, stay with or visit hospitalized people, or care for them at home. Caregivers may also take time off work to do the unpaid work of the person with IBD such as housekeeping and grocery shopping, when the individual is unable to do so. Caregivers are needed for the most severely affected people with IBD, and also for children with IBD (whose parents would need to be involved in their care). However, there are very few data available on the economic impact of IBD on caregivers.


For pediatric cases of IBD, at least one parent would be involved in care of the affected child. If the typical employed person with IBD required 7.2 days per year of sick leave for their own disease management,85


it could be reasonably assumed that the same amount might


be required to manage a child’s illness. Parents of children with IBD could be assumed to have a labour participation rate equal to the general public (81.5% according to the large national surveys in Canada and the US).87,88 employed parents,86 (homemakers, etc.).92


$7 million for parents of the estimated 5,900 children with IBD in Canada in 2012.


For severely affected people with IBD, there are survey data from an Australian study on caregivers. This survey found that there were 2,600 primary caregivers for people whose main condition was disease of the digestive system.93


However, there was a very small sample


size for this estimate, and the results should be treated with caution. Applying prevalence estimates, approximately 23% of these caregivers would be for people with IBD. This translates into one caregiver per 100 persons with IBD (presumably, those with the most severe disease, who would be unable to function normally). Overall, primary caregivers in the survey averaged 30 hours a week caring for people with disabilities. Assuming that 1% of people with IBD required 30 hours a week for care giving, with a Canadian prevalence of 233,000 people with IBD (2,330 severely ill people), care giving would cost approximately $86 million (at minimum wage).


key findings:


• There are very limited data with which to estimate caregiver costs. • At a minimum, parental care giving for pediatric cases of IBD could cost $7 million a year. Potentially, care giving for severely ill people with IBD costs $86 million per year.


OUT-OF-POCKET EXPENSES


Only a few studies have examined out of pocket expenses for people with IBD. These expenses include ostomy supplies, home aids and modifications, formal care (housekeeping, daycare, etc.), travel for medical appointments, nutritional products, and complementary and alternative medicines.


A survey of members of the Crohn’s and Colitis Foundation of Canada found that use of complementary and alternative medicines was quite common.94


THE IMPACT OF INFLAMMATORY BOWEL DISEASE IN CANADA 59


Half of the respondents had An average work wage should be assigned to


while a minimum wage is typically assigned to non-employed individuals Minimum expected caregiver costs for parents of children with IBD total


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