Improving Health Insurance Experiences for Adolescent and Young Adult Cancer Patients
Condition: Adolescent; Young Adult; Cancer
Study type: Interventional

Summary: 
      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: 
      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.
    

Intervention name(s): Health Insurance Education Program (HIEP); Usual Care
Intervention type(s): Behavioral; Other
Intervention description(s): [See arm/group descriptions]; [See arm/group descriptions]
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Double (Participant, Outcomes Assessor)
Primary purpose: Health Services Research
Keywords: Education; Insurance