Observational studyCancer control : journal of the Moffitt Cancer Center
A Longitudinal Observational Mixed Methods Cohort Study of the Psychosocial and Financial Costs of Cancer Care for Pediatric Families in the Maritimes, Canada.
Observational study in Cancer control : journal of the Moffitt Cancer Center. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
IntroductionApproximately 1,000 children are diagnosed with cancer in Canada each year. Treatment places significant financial and psychosocial burdens on families through direct medical costs and indirect costs such as travel and lost income. These burdens can negatively affect parental quality of life. In the Maritimes (Nova Scotia, New Brunswick, and Prince Edward Island), all pediatric cancer care is centralized in Nova Scotia, requiring many families to travel long distances for treatment. However, the impact of this travel burden on Maritime families has not yet been studied.MethodsA prospective, longitudinal, observational mixed-methods cohort design was used for this study. This study examined the indirect and psychosocial costs of families treated at the IWK Health Centre through capturing expenses and interviews respectively. The study period was 2016-2020 and included families who had a child being treated for cancer. Thirty families participated in the study, with 28 providing financial information and 29 participating in interviews. Financial information was collected during the first year of treatment. Semi-structured interviews were used to capture the psychosocial impact. Interviews were transcribed and thematically analyzed using NVivo by two independent researchers.ResultsFamilies spent a median of $9668 (IQR $7944-12958) on indirect costs and had a median of 55 (IQR 0-125) days of income lost. Most families (79%) in our study experienced a psychosocial burden using terms like stress, worry, or frustration directly as a result of the financial burdens from cancer treatment, in addition to the already significant anxiety around having a child with cancer.ConclusionThe financial hardships of cancer treatment have lasting negative implications on families. Current programs and infrastructure are not sufficient to support most families in Canada. There is a need to expand caregiver support programs so families can focus on caring for their child with cancer without suffering financial toxicity.
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