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Table 3 Comments provided by respondents

From: Indirect costs associated with out-of-country referral for proton therapy: a survey of adult and pediatric patients in Alberta, Canada

Domain Comments
High Cost of Housing in Boston “was hard to find an affordable place to stay for several months. I didn’t receive much help to find a place to stay let alone one that was affordable.”
“There were no charitable accommodations for families with sick parents, only for families with sick children. We were forced to live close to the hospital so transportation wouldn’t be an extra cost. Our hospital was in the downtown core of Boston, which is a very expensive city.”
Support for Housing Costs in Boston “While receiving treatment, I was approved for lodging with the American Cancer Society which decreased my costs substantially. “
Entertainment Costs “There were a few costs associated with activities that we did, but of course they were not necessary, but when you are away from home for so long, you need to do something other than sit in your apartment.”
“To be honest, I did choose to try to visit many local museums, art galleries, local attractions. I had decided to treat as much a holiday as I could. I chose to incur those additional costs.”
Impact of Missing Work “I was no longer able to work due to my daughter’s treatment. I was unable to receive EI payments for medical purposes … … Loss of wages and minimal to no income was a huge burden.”
“was self-employed at the time and there was no services available to me to help with expenses. … I did not qualify for unemployment or any kind of assistance. I ended up spending all of my savings …. The total expenses that I ended up having were well over $10,000 not including any lost wages by my parents that accompanied me.”
“Although I continued to be paid, the time away had a significant impact on my work. I was in the first year of my position as XXX.” [could not do the work] while I was planning the treatment … and away at treatment. That had an impact on my [performance and pay review].”
“Since I was away with our sick child, my husband had to work half days while taking care of our other [# removed] children. If not for the generosity of family and strangers through a GoFundMe, there is no way we would have been able to pay all our bills.”
General “Would do it again in a heartbeat. I am terrified to think that proton radiation might not be an option for other families dealing with brain cancer. Our daughter handled treatment exceptionally well.”
“We are very grateful that our son was referred for proton therapy.”
“International Services and hotels were excellent. Treated us royally.”
[In relation to the costs:] “Doesn’t matter. We’d do it again.”
“Our accommodation costs were fairly low since we stayed at the Ronald McDonald House, which was wonderful.”
[patient continued to receive medical bills for thousands of dollars for procedures already paid for by the province] “While I was able to sort the matter out each time, it’s still something that would have never happened if Canada had its own Proton center. Canada needs its own Proton center!”