Insurance, Financial Strain, Family Function, and Psychosocial Wellbeing in Pediatric Patients and Parents with Hematologic Malignancies

Objective: Survival rates for pediatric cancer have increased due to therapeutic advances. However, many newer treatments are costly, and may be associated with financial toxicity, family dysfunction, and psychosocial impairment. This study examines these outcomes in a cohort of patients treated for hematologic malignancies.

Study Design: This is a cohort study with English and Spanish speaking patients 21 years or younger, diagnosed with a hematologic malignancy from 2017 – present in the pediatric oncology program at Vanderbilt University Medical Center. Baseline surveys include the COST-FACIT measuring financial toxicity, General Functioning-6 (GF6) measuring family function, PROMIS-57 Adult and PROMIS-49 Parent/Pediatric in part measuring anxiety and depression, and PedsQL measuring health-related quality of life. Analyses were conducted using Wilcoxon rank sum test and Fisher's test for continuous and categorical data, respectively. Correlation between two continuous variables is estimated and reported with 95% confidence intervals.

Results: Of the 99 participants enrolled to date, the median (quartiles) age is 8.0 (5.0, 15.8) years, with 51% male, 78% White, 10% African American, and 4% Hispanic. 80% of participants have a diagnosis of leukemia and 20% of lymphoma. There are 65% of participants on active therapy and 45% have enrolled on a clinical trial. More than half (55%) of the participants’ designated primary parent have an educational background of high school or less, with 66% parents married, 26% single, and 8% divorced or separated. Most (63%) participants have private insurance, 32% have public insurance, 3% are uninsured and 2% have unspecified coverage.

On the COST-FACIT survey, among 95 participants, the median score was 23.0 (17.0, 30.0), where lower scores are associated with greater financial toxicity. Approximately 17% of participants reported Grade 2 (high level) financial toxicity (score 1-13), 45% experienced Grade 1 financial toxicity (score 14-25), and 38% reported no financial toxicity (score >25). Those with public insurance reported significantly worse financial toxicity compared to those with private insurance (median COST-FACIT score of 20 versus 25; p= <0.01). Approximately half (52%) of private insured patients reported at least Grade 1 financial toxicity, while 83% of public insured patients reported this. We found no increase in pediatric patient-reported anxiety or depression T-scores from the population norm of 50. However, there was a statistically significant negative correlation (-0.30 [-0.50, -0.06], p=0.015) between the COST-FACIT score and parent-proxy of patient anxiety T-score, indicating increased anxiety associated with increased financial toxicity. No significant association was found between parent-reported patient depression and COST-FACIT score (-0.039 [-0.280, 0.207], p=0.76). As measured by the GF6 Scale, unhealthy family function was not noted, with a median GF6 score of 1.1 (unhealthy family function >2). The median score on the PedsQL among 26 parent proxy surveys for children ages 2-4 years was 62.5 (42.8, 75.0), with a population norm of 88, indicating worsened health-related quality of life in our patient group.

Conclusion: Preliminary data from this study demonstrate overall self-reported financial toxicity similar to the population level norms but worsened among parents of patients with public insurance relative to private insurance. The increased financial burden reported by those with public insurance may reflect lower baseline income with further financial loss due to missing employment for appointments/hospitalizations, as well as increased medical expenses. In addition, increased parent report of patient anxiety was associated with increased financial toxicity, indicative of the combined financial and emotional stress of cancer care. Although too small a group to examine an association with financial toxicity at this time, worsened quality of life was also reported for the youngest patients, ages 2-4 years. With ongoing enrollment, future analyses will further explore the association between demographic factors, social determinants of health and type of treatment on financial toxicity as well as the impact of financial toxicity on family function, and psychosocial wellbeing.