A systematic scoping review of the recent literature (∼2011-2017) about the costs of illness to parents of children diagnosed with cancer.

PURPOSE: The study purpose was to map and identify gaps in the recent (∼2011-2017) literature on the costs of illness to parents of children diagnosed with cancer. The costs of illness include direct costs, indirect costs and psychosocial costs.

METHODS: A systematic scoping review was conducted. Data sources included PubMed, CINAHL, PsychInfo and EconLit. Studies were eligible for inclusion if they were conducted in high-income countries, published in the English language, and reported parent perspectives on direct costs, indirect costs and/or psychosocial costs due to financial costs.

RESULTS: 25 studies were eligible. Most were conducted in Canada, the USA, or Sweden. The studies used a variety of designs, target populations, time frames and sample sizes. Intervention studies were lacking. Across studies fathers were underrepresented. While no study comprehensively measured costs of illness, more studies used rigorous methods and considered psychosocial costs. Financial costs were measured using a micro-costing or general estimates approach. Psychosocial costs were measured using a variety of PRO measures, some of which were investigator developed. The studies provide evidence that financial toxicity occurs in pediatric oncology.

CONCLUSIONS: Future studies should comprehensively measure costs using a consistent set of established measures and make efforts to recruit fathers to cost of illness research. Interventions to mitigate financial toxicity are needed.