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Grant Details

Grant Number: 5R01CA242729-03 Interpret this number
Primary Investigator: Kirchhoff, Anne
Organization: University Of Utah
Project Title: Improving Health Insurance Experiences for Adolescent and Young Adult Cancer Patients
Fiscal Year: 2021


PROJECT ABSTRACT Cancer patients in the United States often experience severe distress about out-of-pocket costs due to their cancer treatment. Adolescent and young adult (AYA) cancer patients face more gaps in their health insurance coverage than older individuals with cancer. Medical costs have substantial effects on AYA cancer patients as studies show they are more likely to borrow money, go into debt, and file for bankruptcy after a cancer diagnosis than patients diagnosed with cancer at older ages. Improving health insurance and cost-related literacy – that is, a patient’s ability to make informed decisions about choosing and using health insurance, understanding financial concepts specific to care, and comfort discussing financial burden with providers – are necessary to ensuring AYA cancer patients receive high quality cancer care. The goal of this grant is to refine and pilot test an existing health insurance education program (HIEP) to improve insurance literacy and cost- related literacy among AYA cancer patients. We will identify age-related differences related to health insurance and cost literacy among AYAs diagnosed with cancer ages 18-39, and adapt the HIEP materials accordingly. We will conduct this study within the Huntsman-Intermountain Adolescent and Young Adult (HI-AYA) Cancer Care Program, which is a joint effort between the Huntsman Cancer Institute and Intermountain Healthcare. We will evaluate whether the HIEP delivered by the HI-AYA patient navigators improves AYA cancer patients’ health insurance and cost-related literacy compared to usual navigation care, which does not include education on insurance and costs. We aim to: 1) Adapt and refine a health insurance education program (HIEP) for AYA cancer patients. To inform adaptations to the existing intervention, we will conduct semi-structured interviews with AYA cancer patients (sampled within age of diagnosis: 18-26 years n=10; 27-39 years n=10) and pilot test the adapted HIEP with 10 AYA cancer patients. 2) Conduct a telemedicine-based pilot randomized controlled trial (RCT) of the HIEP among AYA cancer patients (n=80). Hypotheses: Among AYA cancer patients, the HIEP will be feasible and acceptable and improve their health insurance literacy and cost-related literacy compared to usual care. 3) Evaluate and refine the HIEP for dissemination in a larger RCT. We will conduct interviews with a randomly selected subset of HIEP intervention arm participants (18-26 years n=10; 27-39 years n=10) to understand their satisfaction, recommendations for modifications on delivery, and recommendations for intervention topics and content modifications. The long-term goals of this work are to 1) implement a sustainable health insurance education program that can be disseminated in oncology institutions throughout the United States and 2) influence health care policy about AYA cancer patients’ access to and use of health insurance and their medical costs.


Sources of informal financial support among adolescent and young adult cancer survivors: a mixed methods analysis from the HIAYA CHAT study.
Authors: Waters A.R. , van Thiel Berghuijs K.M. , Kaddas H.K. , Vaca Lopez P.L. , Chevrier A. , Ray N. , Tsukamoto T. , Allen K. , Fair D.B. , Lewis M.A. , et al. .
Source: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2023-02-11; 31(3), p. 159.
EPub date: 2023-02-11.
PMID: 36773110
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"I thought there would be more I understood": health insurance literacy among adolescent and young adult cancer survivors.
Authors: Waters A.R. , Mann K. , Warner E.L. , Vaca Lopez P.L. , Kaddas H.K. , Ray N. , Tsukamoto T. , Fair D.B. , Lewis M.A. , Perez G.K. , et al. .
Source: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2022 May; 30(5), p. 4457-4464.
EPub date: 2022-02-02.
PMID: 35107600
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