The long-term financial experiences of adolescent and young adult cancer survivors

Abstract

Background Cancer-related financial hardship can negatively impact financial well-being and may prevent adolescent and young adult (AYA) cancer survivors (ages 15–39) from gaining financial independence. This analysis explored the financial experiences following diagnosis with cancer among AYA survivors. Methods We conducted a cross-sectional, anonymous survey of a national sample of AYAs recruited online. The Comprehensive Score for Financial Toxicity (COST) and InCharge Financial Distress/Financial Well-Being Scale (IFDFW) assessed financial hardship (cancer-related and general, respectively), and respondents reported related financial consequences and financial coping behaviors (both medical and non-medical). Results Two hundred sixty-seven AYA survivors completed the survey (mean 8.3 years from diagnosis). Financial hardship was high: mean COST score was 13.7 (moderate-to-severe financial toxicity); mean IFDFW score was 4.3 (high financial stress). Financial consequences included post-cancer credit score decrease (44%), debt collection contact (39%), spending more than 10% of income on medical expenses (39%), and lacking money for basic necessities (23%). Financial coping behaviors included taking money from savings (55%), taking on credit card debt (45%), putting off major purchases (45%), and borrowing money (42%). In logistic regression models, general financial distress was associated with increased odds of experiencing financial consequences and engaging in both medical- and non-medical-related financial coping behaviors. Discussion AYA survivors face long-term financial hardship after cancer treatment, which impacts multiple domains, including their use of healthcare and their personal finances. Interventions are needed to provide AYAs with tools to navigate financial aspects of the healthcare system; connect them with resources; and create systems-level solutions to address healthcare affordability. Implications for Cancer Survivors Survivorship care providers, particularly those who interact with AYA survivors, must be attuned to the unique risk for financial hardships facing this population and make efforts to increase access available interventions.

Health Insurance Literacy Improvements Among Recently Diagnosed Adolescents and Young Adults With Cancer: Results From a Pilot Randomized Controlled Trial

“…In the United States, given the complexity health insurance coverage that requires patients to build a deep knowledge of plan structures and out-of-pocket costs, 3 the increasing shift toward placing financial burden on patients because of increasing out-of-pocket costs, and the continual federal insurance policy changes that can both help 44 and harm 45 patients with cancer, programs such as HIAYA CHAT represent an important strategy to support AYA patients with cancer who can face a lifetime of financial repercussions from their cancer treatment. 46…”

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“…When compared with younger pediatric patients who have cancer, AYAs report greater psychological and financial distress and fewer positive health beliefs and treatment‐adherent behaviors 19–21 . Furthermore, AYAs with cancer have high risks of late and long‐term effects, including financial hardship, cancer‐related infertility, sexual dysfunction, cardiovascular dysfunction, disease recurrence, and second primary cancers 22–27 …”

“…[19][20][21] Furthermore, AYAs with cancer have high risks of late and long-term effects, including financial hardship, cancer-related infertility, sexual dysfunction, cardiovascular dysfunction, disease recurrence, and second primary cancers. [22][23][24][25][26][27] Despite these adverse outcomes, AYAs with cancer have a tremendous capacity for positive psychosocial outcomes. In the largest population-based patient experience study of AYAs to date, the National Cancer Institute's AYA Health Outcomes and Patient Experience (AYA HOPE) study, participants reported the coexistence of both negative and positive life changes.…”

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