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.

Public Health Relevance

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 determine the feasibility, acceptability, and efficacy of the HIEP in a pilot randomized controlled trial of n=80 AYA cancer patients. Our goal is to develop a program that can be disseminated across the United States to improve insurance literacy and financial concerns for AYA cancer patients in both academic and community cancer centers.

Agency
National Institute of Health (NIH)
Institute
National Cancer Institute (NCI)
Type
Research Project (R01)
Project #
1R01CA242729-01
Application #
9820634
Study Section
Clinical Management of Patients in Community-based Settings Study Section (CMPC)
Program Officer
Chou, Wen-Ying
Project Start
2019-07-16
Project End
2022-06-30
Budget Start
2019-07-16
Budget End
2020-06-30
Support Year
1
Fiscal Year
2019
Total Cost
Indirect Cost
Name
University of Utah
Department
Pediatrics
Type
Schools of Medicine
DUNS #
009095365
City
Salt Lake City
State
UT
Country
United States
Zip Code
84112