Hematology Advisor: What did you identify as the main sources of financial toxicity in these families?

Dr Kelada: During their child’s treatment parents reported that parking fees, fuel, and other expenses related to regularly traveling to and from the treating hospital — for example, road tolls — contributed to their financial toxicity. After treatment completion, parents reported that out-of-pocket medical costs contributed to their financial toxicity.

Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: families living in low SES areas reported ongoing financial toxicity after childhood cancer; and mothers, particularly those who were on or recently returned from maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.


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Presumably for families living in low SES areas, the income loss associated with reduced working hours, coupled with out-of-pocket costs, were exacerbated by their lack of pre-existing savings and assets. While financial support from families, communities, non-profit organizations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.

Mothers who were on maternity leave when their child was diagnosed and those who recently returned to employment after maternity leave reported that they wanted to work but were unable to find suitable employment after treatment completion. A large issue for these mothers was that potential employers thought they had been out of work for too long. The other issue was that mothers needed employment that would allow flexible working hours and arrangements to work from home in order to attend medical appointments and attend to their child’s other medical needs

Hematology Advisor: What are some of most practical solutions to these issues, and how can clinicians assist and advocate for patients and their families in these matters?

Dr Kelada: Even families in a high-income country with universal healthcare can experience detrimental financial and employment impacts of childhood cancer several years after treatment completion. Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.

Clinical staff could more consistently assess families’ financial toxicity and refer to financial counselors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.

Flexible workplace agreements appear to be important for parents of children with cancer and may be particularly important for mothers returning to work after their child’s treatment completion. Cancer-related disruptions are likely to continue for years after treatment completion. Organizations should therefore offer flexibility to parents where possible, such as working from home and time off in lieu of overtime pay. This is something for which clinicians can help advocate. These measures are essential to ensure that we avoid long-term financial and employment inequalities between families with and without childhood cancer.

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Hematology Advisor: What are remaining research needs regarding this topic?

Dr Kelada: We need to develop targeted financial and employment support strategies for parents, particularly mothers. Return-to-work interventions have previously been shown to help adult survivors of cancer in returning to work when they are ready. Similar interventions for parents of child cancer survivors should also be assessed.

Research could also determine whether allowing greater flexibility with outpatient medical appointment times can reduce the interference with parents’ — mainly mothers’ — careers.

References

  1. Roser K, Erdmann F, Michel G, Winther JF, Mader L. The impact of childhood cancer on parents’ socio-economic situation-a systematic review. Psychooncology. 2019;28(6):1207-1226.
  2. Bona K, Dussel V, Orellana L, et al. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage. 2014;47(3):594‐603.
  3. Kelada L, Wakefield CE, Vetsch J, et al. Financial toxicity of childhood cancer and changes to parents’ employment after treatment completion [published online April 25, 2020.] Pediatr Blood Cancer. doi: 10.1002/pbc.28345