Hidden Financial Costs in Treatment for Childhood Cancer: An Australian study of Lifestyle Implications for Families Absorbing Out-of-Pocket Expenses

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Abstract
The impact of out-of-pocket expenses on five domains of family lifestyle were explored: social, assets, credit, utilities, and charity. Using a cross-sectional survey, 100 parents of pediatric cancer patients reported on the types of out-of-pocket expenses incurred and the perceived lifestyle impact of meeting those expenses. Eighty percent of the sample reported a minimum of five different out-of-pocket expenses (total mean value = AUS$19,064; approximately US$9,723). The majority reflected travel, accommodation, and communication costs, use of work-related entitlements, and changes in paid employment. In lifestyle terms, the area of greatest impact was found for the social domain, such as cancelling vacations and giving up recreational pleasures and social expenditure. Those families living furthest from the major cancer treatment center reported the greatest range of out-of-pocket expenses and subsequent lifestyle impact. While there were few differences as a function of cancer type, results suggested that families most vulnerable to financial distress tended to be those whose child had spent relatively longer on treatment. In meeting out-of-pocket expenses, parents primarily seek ways to “trim the fat” off existing family expenditure. While all families may incur extra expenses, parents of patients located a significant distance from the cancer treatment center remain especially vulnerable (despite increased government allowances). Creative solutions for addressing some expenses may include applications of telemedicine to augment outreach services.

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