Experiences with Life Insurance Attainability

Experiences with Life Insurance Attainability for Individuals with or at Risk for Hereditary Sudden Cardiac Arrest/Death-related Diagnoses (IRB Study Number: STU00222432)

The purpose of this study is to discuss your experiences applying for life insurance as an individual with or at risk for a hereditary cardiac condition as well as identify possible strategies taken when applying for life insurance. First, you will be asked to complete and consent to the 5-minute short survey, below. Following survey submission, select participants will be invited to participate in a one-on-one follow-up 45-minute Zoom or phone interview if consent is provided.

The primary risk of participation is the possibility of emotional or psychological distress.

The main benefit of participation is being a part of the expansion of current knowledge of life insurance attainment within the arrythmia- related (SCA/SCD) diagnosis community, provide insight into strategies for individuals who wish to attain life insurance, and assist in the development of specific patient/provider resources.

Eligibility Criteria:

• Individual with a hereditary cardiac condition who had a sudden cardiac arrest or are at risk for sudden cardiac arrest/death related diagnoses who reside within the United States who pursue applying for life insurance.
• Participants must be a least 18 years of age, have a clinical diagnosis of an eligible sudden arrhythmic death-related syndrome and/or support of positive genetic test results, and have applied for life insurance.
• Participants may be individuals with:
  • Clinical diagnosis, positive genetic testing result for SCA/SCD condition
  • Clinical diagnosis, negative genetic testing result for SCA/SCD condition, OR
  • No clinical diagnosis, positive genetic testing result for SCA/SCD condition with or without a family history of the same condition.
• Eligible participants must be English speaking and reading.
• Exclusion criteria for being interviewed within this study includes participants refusing or unable to provide informed consent, individuals who have not applied for life insurance, and/or participants who did not complete or consent the recruitment survey in full

FAQ’s

Will I be paid or given anything for taking part in this study?
If you agree to take part in this research study, including the completion of the recruitment survey as well as invitation and completion of the one-on-one interviews, you will be compensated for your time with a $65 Visa gift card sent to your home address once all Zoom or phone interviews are complete.

If you have questions, concerns, or complaints, you can talk to the student researcher, Alexandra Blanco, by email ([email protected]) or to the Principal Investigator Lisa Marie Castillo, MS, CGC by phone at (312)-503-2661 or email ([email protected]).

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