Improving Health Insurance Experiences for Adolescent and Young Adult Cancer Patients

Study Overview
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Brief Summary
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This is a test of an existing health insurance education program (HIEP) in adolescent and young adult (AYA) individuals (aged 18-39) diagnosed with cancer. The study will evaluate whether the HIEP delivered by patient navigators improves participants' health insurance and cost-related literacy compared to usual navigation care, which does not include education on insurance and medical costs. The study team hypothesizes that: The HIEP will improve participants' health insurance and cost-related literacy compared to usual navigation care. Specifically, that participants in the intervention arm will report greater 1) health insurance and cost literacy, including confidence with provider communication about costs, 2) familiarity with ACA policies, and 3) improvement in financial distress related to medical costs. Participants will fill out a survey upon enrollment and a follow up survey 3 months after meeting with a patient navigator where they may or may not receive the HIEP.

Detailed Description
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The goal of this research is to refine and pilot test an existing health insurance education program (HIEP) to improve health insurance and cost-related literacy among adolescent and young adult (AYA) individuals who have recently been diagnosed with cancer. This study will be conducted within the Huntsman-Intermountain Adolescent and Young Adult (HI-AYA) Cancer Care Program, which is a unique collaboration between the Huntsman Cancer Institute and Intermountain Healthcare, the largest oncology providers in Utah. Initially, age-related differences related to health insurance and cost literacy among AYAs diagnosed with cancer ages 18-26 and 27-39 years will be identified, and the HIEP materials will be adapted accordingly. The HIEP delivered by the HI-AYA patient navigators, will be investigated to see if it improves participants' health insurance and cost-related literacy. Upon enrollment, participants will fill out a survey containing questions about their current health insurance plan, financial status, demographics, health insurance knowledge, and financial toxicity. Participants will then be randomized into separate trial arms after which participants in both groups will meet with a HI-AYA patient navigator. Participants in the interventional arm will receive 4 educational sessions surrounding health insurance use and laws (four sessions total occurring approximately every two weeks). These educational sessions will be conducted, in person, over video conference calls, or over the telephone, and will cover: health insurance terms and concepts insurance coverage (insurance cards, bills, schedule and explanation on benefits) health insurance laws, rights and the appeals process budgeting and resources. These sessions will be scheduled with each participant according to their availability, with the goal of meeting every other week. Approximately three months after meeting with the patient navigator, participants in both arms of the trial will fill out a second survey, including similar questions to those in the first survey as well as questions surrounding satisfaction with the HIEP and the patient navigator delivery for those who received the HIEP. After the post survey is complete, a small subset of participants in both the intervention and control arm will be randomly selected to complete an interview to better understand satisfaction with patient navigation, the intervention, recommendations for modifications on delivery modality, and recommendations for intervention topics and content modifications to identify components of the HIEP that require refinement prior to potential scaling of the intervention to a larger sample. Another small subset of participants will be randomly selected to complete an interview from the control arm to discuss their satisfaction with their patient navigation and to ask how they found resources concerning health insurance during their treatment.

Official Title
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Huntsman Intermountain Adolescent and Young Adult Cancer Care Program- Cancer Health Insurance Tool Study

Conditions
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Adolescent, Young Adult, Cancer

Intervention / Treatment
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* Behavioral: Health Insurance Education Program (HIEP)
* Other: Usual Care


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Were diagnosed with cancer between the ages of 18 and 39 AND Are within 1 year of a cancer diagnosis AND Are actively receiving chemotherapy, surgery, radiation, and/or hormonal therapy AND Are currently insured AND A patient at Primary Children's Hospital, Intermountain Medical Center or Huntsman Cancer Institute AND Speak English AND Have access to an electronic device compatible with video conferencing (e.g., smartphone, laptop, etc.). Exclusion Criteria: Are unable to participate due to developmental delay OR Speak a language other than English OR Are currently uninsured OR Do not have access to an electronic device compatible with video conferencing (e.g., smartphone, laptop, etc.).

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 40 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Health Services Research
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Double


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: HIEP intervention<br>Participants will be randomized to receive the insurance navigation intervention from patient navigators, which includes four, one hour long, educational learning sessions. Randomization will be done by age at diagnosis and site. | Behavioral: Health Insurance Education Program (HIEP)<br>* [See arm/group descriptions]<br>|
| Active Comparator: Usual Care<br>Participants will be randomized to receive standard navigation provided by patient navigators (usual care). | Other: Usual Care<br>* [See arm/group descriptions]<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Feasibility Measurement | Number of eligible enrolled and sessions completed | Post-Assessment survey (Weeks 13 (+/- 2 weeks)) | 
| Acceptability - Module Satisfaction | Questions surrounding satisfaction with the HIEP. These will be asked at the post-assessment survey and will consist of 5-point scales of satisfaction. We will report percentages of participants reporting satisfaction of each response. | Post-Assessment survey (Weeks 13 (+/- 2 weeks)) | 
| Navigator satisfaction | Validated Patient Satisfaction with Navigator Interpersonal Relationship (PSN-I) measure at post assessment survey. We will report the mean and standard deviation. | Post-Assessment survey (Weeks 13 (+/- 2 weeks)) | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Changes in Efficacy- Health Insurance Literacy | Differences between Health Insurance Literacy Measure (HILM) reported at the intro baseline and exit post-assessment survey. Differences will be examined by age group and by treatment arm. Lower HILM scores indicate lower health insurance literacy. We will report mean and standard deviation. | Baseline (Week 0) and Post Assessment survey (Weeks 13 (+/- 2 weeks)) | 
| Changes in Efficacy- Affordable Care Act (ACA) Familiarity | Question surrounding familiarity with the ACA reported at the baseline and post-assessment survey. We will report percentages of responses. | Baseline (Week 0) and Post Assessment survey (Weeks 13 (+/- 2 weeks)) | 
| Changes in Efficacy-Financial Distress | Differences between COmprehensive Score for financial Toxicity (COST) reported at the baseline and post-assessment survey. Lower COST scores indicate worse financial toxicity. Differences will be examined by age group and by treatment arm. We will report mean and standard deviation. | Baseline (Week 0) and Post Assessment survey ( Weeks 13 (+/- 2 weeks)) | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Education, Insurance