“I thought there would be more I understood”: health insurance literacy among adolescent and young adult cancer survivors

Waters, Austin R.; Mann, Karely; Warner, Echo L.; Lopez, Perla L. Vaca; Kaddas, Heydon K.; Ray, Nicole; Tsukamoto, Tomoko; Fair, Douglas; Lewis, Mark A.; Perez, Giselle K.; Park, Elyse R.; Kirchhoff, Anne C.

doi:10.1007/s00520-022-06873-2

Cited by 15 publications

(23 citation statements)

References 30 publications

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“…For instance, some patients may not fully understand what services apply toward a deductible and may forgo receiving preventive care 10,11 . This burden of insurance navigation may fall on patients and their informal caregivers (e.g., family members, friends) 12,13 . Consequently, interventions targeting health insurance literacy may be warranted to address these challenges.…”

Section: Introductionmentioning

confidence: 99%

Health insurance literacy among head and neck cancer patients and their caregivers: A cross‐sectional pilot study

Nguyen

McCormick

Patel

et al. 2022

Laryngoscope Investig Oto

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Objective Health insurance literacy interventions may reduce financial burden and its effects on cancer patients and their caregivers. However, little is known about the health insurance literacy levels of head and neck cancer (HNC) patients and their caregivers. We assessed the feasibility of screening for health insurance literacy in a pilot study and described the health insurance literacy levels of HNC patients and their caregivers. Methods We administered a survey that assessed demographics and subjective and objective health insurance literacy to HNC patients and their caregivers. Subjective health insurance literacy was measured through the Health Insurance Literacy Measure (score range: 0–84). Objective health insurance literacy was measured through correct answers to a previously developed 10‐question knowledge test. Due to a small sample size, inferential statistics were not used; we instead descriptively reported findings. Results The pilot included 48 HNC patients and 13 caregivers. About 44.4% of patients and 30.8% of caregivers demonstrated low health insurance literacy (HILM ≤60). On the 10‐item knowledge test, patients had an average of 6.8 (SD: 2.3) correct responses and caregivers had 7.8 (SD: 1.1) correct responses. Calculating out‐of‐pocket costs for out‐of‐network services was challenging; only 9.5% of patients and 0% of caregivers answered correctly. Conclusion Additional outreach strategies may be needed to supplement screening for health insurance literacy. Areas of focus for interventions include improving understanding of how to calculate financial responsibility for health care services and filing an appeal for health insurance claim denial. Level of Evidence IV

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Section: Introductionmentioning

confidence: 99%

Health insurance literacy among head and neck cancer patients and their caregivers: A cross‐sectional pilot study

Nguyen

McCormick

Patel

et al. 2022

Laryngoscope Investig Oto

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“…Findings from this study demonstrate the hardship AYA survivors face nearly a decade post-diagnosis. We, as well as others, have previously highlighted the need to provide cancer patients with financial navigation and increase their health cost literacy (i.e., ability to understand financial concepts related to care) and health insurance literacy [ 36 – 39 ]. For AYAs, who may still be developing their financial capability and may have limited experience with the healthcare system, these tools help them to engage in cost-related discussions with their providers, which we have shown to be promising in reducing out-of-pocket expenses [ 39 , 40 ].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2022

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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.

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“…Studies have shown that even highly educated AYAs have poor health insurance literacy and need support to understand their medical bills and how to make payments [6,16]. Importantly, a lack of understanding of insurance terms and coverage types may lead AYAs to avoid services that are exempt from cost-sharing, or to receive care that leads to unexpected costs [17]. Yet, few randomized controlled trials have tested the efficacy of insurance education to improve outcomes for cancer patients and survivors [18].…”

Section: Background and Rationale {6a}mentioning

confidence: 99%

“…1 titled "Aims outline, " there are three aims to the HIAYA CHAT study. Aim 1 focused on the adaptation of HIAYA CHAT through surveys, interviews, and pilot intervention sessions with AYA patients and survivors (Vaca Lopez PL, Warner EL, Waters AR, Mann K, Anderson JS, Ray N, et al: Adaption and development of a health insurance education program fro adolescent and young adult cancer patients, submitted) [17]. In this manuscript, we provide an overview of Aim 2 to assess the feasibility and acceptability of the virtual pilot randomized controlled trial along with preliminary efficacy.…”

Section: Objectives {7}mentioning

confidence: 99%

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HIAYA CHAT study protocol: a randomized controlled trial of a health insurance education intervention for newly diagnosed adolescent and young adult cancer patients

Mann

Waters

Park

et al. 2022

Trials

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Background For adolescent and young adult (AYA) cancer patients aged 18 to 39 years, health insurance literacy is crucial for an effective use of the health care system. AYAs often face high out-of-pocket costs or have unmet health care needs due to costs. Improving health insurance literacy could help AYAs obtain appropriate and affordable health care. This protocol illustrates a randomized controlled trial testing a virtual health insurance education intervention among AYA patients. Methods This is a two-arm multisite randomized controlled trial. A total of 80 AYAs diagnosed with cancer in the Mountain West region will be allocated to either usual navigation care or tailored health insurance education intervention with a patient navigator that includes usual care. All participants will complete a baseline and follow-up survey 5 months apart. The primary outcomes are feasibility (number enrolled and number of sessions completed) and acceptability (5-point scale on survey measuring satisfaction of the intervention). The secondary outcomes are preliminary efficacy measured by the Health Insurance Literacy Measure and the COmprehensive Score for financial Toxicity. Discussion This trial makes a timely contribution to test the feasibility and acceptability of a virtual AYA-centered health insurance education program. Trial registration ClinicalTrials.gov NCT04448678. Registered on June 26, 2020

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“I thought there would be more I understood”: health insurance literacy among adolescent and young adult cancer survivors

Cited by 15 publications

References 30 publications

Health insurance literacy among head and neck cancer patients and their caregivers: A cross‐sectional pilot study

Health insurance literacy among head and neck cancer patients and their caregivers: A cross‐sectional pilot study

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

HIAYA CHAT study protocol: a randomized controlled trial of a health insurance education intervention for newly diagnosed adolescent and young adult cancer patients

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