Susan K Parsons, Rachel Murphy-Banks, Angie Mae Rodday, Michael E Roth, Kimberly Miller, Nadine Linendoll, Randall Chan, Howland E Crosswell, Qingyan Xiang, David R Freyer
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Abstract
Background: The long-term financial impact of cancer care has not been adequately addressed in young adults. As part of a remote intervention study, we describe medical financial distress and hardship among young adult survivors of blood cancer at study entry.
Methods: Young adults were recruited from 6 US hospitals. Using a Research Electronic Data Capture link, young adults confirmed their eligibility-namely, currently 18 to 39 years of age, blood cancer diagnosis 3 or more years ago, off active treatment, and not on parent's insurance. Following consent, the baseline assessment was sent. The primary outcome measure, the Personal Financial Wellness Scale, measured financial distress (scored as severe, 1-2; high, 3-4; average, 5-6; and low to no, 7-10). Medical financial hardship encompassed material hardship, psychological impact, and coping behaviors. Descriptive summary statistics and linear regression were used.
Results: Among the 126 participants, 54.5% came from minority racial or ethnic groups. Median time since diagnosis was 10 years (interquartile range = 6-16 years), with 56% having received a diagnosis when they were between 18 and 39 years of age. The overall mean (standard deviation) Personal Financial Wellness Scale score was 5.1 (2.4), but 49% reported severe or high distress. In multivariable analysis, female sex, Hispanic ethnicity, and lower income were strongly associated with worse Personal Financial Wellness Scale scores. Among participants with severe financial distress (n = 26), 72% reported 2 or more household material hardships, had worse scores across all psychological domains, and altered survivorship care because of cost (68%).
Conclusions: Nearly half of long-term young adult cancer survivors reported severe or high levels of financial distress. Individuals with severe or high distress also reported more medical financial hardship than other participants. This finding highlights the need for ongoing financial intervention in this vulnerable population.
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