Financial Coping Strategies and Financial Assistance Following a Pediatric Hematologic Malignancy

Background: Families experience significant financial stress after a pediatric leukemia or lymphoma diagnosis, which can result in household material hardship (HMH) such as housing, food, or energy insecurity. This study aims to investigate the financial coping strategies (FCS) used by families in the face of financial stress during the first year after diagnosis and describe the forms of financial assistance received to mitigate material hardship.

Methods: This is a cross-sectional survey study conducted at Benioff Children's Hospitals in San Francisco and Oakland. The study surveyed caregivers of patients ages 6 months to 21 years who were diagnosed with blood cancers (acute lymphocytic leukemia (ALL), acute myeloid leukemia, chronic myeloid leukemia, juvenile myelomonocytic leukemia, Hodgkin's (HL), and non-Hodgkin's lymphoma (NHL)) between March 2015 and April 2019. Patients who received hematopoietic stem cell transplant within the first year of diagnosis were excluded. The survey, available in both English and Spanish, collected data on demographics, baseline income, and HMH at twelve months after diagnosis. The survey included validated scoring systems such as the COmprehensive Score for Financial Toxicity (COST) Outcome Measure and the Duke-UNC Functional Social Support Questionnaire. Household income was the exposure of interest and was categorized as either high (greater than or equal to 400% of the 2018 federal poverty level) or low (less than 400% FPL); the 400% cut-off addressed the high cost of living in the San Francisco Bay Area. The survey queried families on the types of financial coping strategies adopted, and forms of private, hospital, and governmental assistance received within the first year after diagnosis.

Results: This cohort included 66 caregivers. Of this group, 54% were low-income, 46% of patients had public insurance, and 24% had a preferred language other than English. The majority of the patients were diagnosed with ALL (71%); the remaining patients had NHL (15%), HL (9%), and other leukemias (5%). The median age of patients was 6.2 years (IQR 3.5 - 12.0) and the median age of surveyed caregivers was 35 years (IQR 29-43). Caregiver and patient characteristics are described in Table 1.

Low-income families were significantly more likely to incur debt (55% versus 18%, p=0.003) than high-income families. Specifically, low-income families were more likely to borrow money from family or friends (55% versus 11%, p<0.001) and take out a loan (24% versus 3.6%, p=0.03) than high-income families. Reduced savings (39%) and lost investments (25%) were common across both income groups. While not reaching statistical significance, the use of private fundraising was more common among low-income families (55% versus 43%, p=0.4), while the use of financial counselors was more common among high-income families (32% versus 22%, p=0.4).

Almost half of respondents reported experiencing a form of HMH at 12 months after diagnosis, as detailed in Table 2. Among families with food, housing or energy insecurity after diagnosis, 80%, 52%, and 47% respectively received any hospital or governmental assistance specific to their experienced hardship. The specific types of assistance received by families with material hardships are shown in Table 2.

Conclusions: These results highlight the impact of a pediatric blood cancer diagnosis on short-term material hardship and long-term financial security. After diagnosis, low-income families were more likely to borrow money or take loans, which can have lasting financial consequences in the form of interest payments or worsening credit. While most families with food insecurity received some level of assistance, housing and energy assistance were less common. Given the high prevalence of material hardship seen in this population, our findings emphasize the need to systematically screen for HMH. To effectively allocate accessible resources towards HMH, additional research on generating evidence-based interventions is warranted. Work is underway to investigate how financial coping strategies and the availability of financial assistance have changed during the COVID-19 era.

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