Introduction Familial hypercholesterolemia (FH) is a genetic condition which elevates cholesterol levels and increases risk of premature cardiac events.¹ Medical treatment greatly reduces those risks.¹ However, in the United States, FH is underdiagnosed. We aimed to co-design and evaluate direct outreach and referral with patients who might have FH based on electronic medical record documentation.

Methods Two sets of interviews: (1) seeking advice for designing outreach from a convenience sample of people who have FH and people with no FH experience and (2) evaluating the outreach with a convenience sample of patients who received it. Two researchers conducted each interview. Thematic analysis included investigator triangulation.

Results Full results available in January 2024. To date, we have completed 9 pre-outreach interviews and 13 post-outreach interviews. Pre-outreach, participants recommended a mailed letter to initiate contact. Most felt the outreach should be from the patient’s primary care clinician. Outreach ultimately included a mailed letter from lipid specialists indicating partnership with primary care clinicians; letter through the online patient portal; and telephone call(s) from a lipid specialist to patients who had not responded. Post-outreach, mixed feelings remained about having an unknown lipid specialist initiate contact. Phone calls were most impactful in initiating testing and/or treatment. Few were skeptical about identification through the medical record. Participants who responded to the outreach indicated that further contact with the lipid specialists enhanced trust in the outreach process through the specialists’ expertise, persistence, and shared decision-making approach to testing and treatment.

Discussion Coproduction with the target population led to outreach about FH that was acceptable to most recipients. Some had privacy concerns surrounding identification through the electronic medical record and contact by an unknown clinician.

Conclusion(s) Coproduced materials and shared decision-making about subsequent testing and treatment can improve trust and support relationship-building in the context of direct-to-patient outreach.

Reference

1. Brandts J, Ray KK. J Am Coll Cardiol. 2021;78(18):1831–1843.