Table 2 Implementation strategy specification
Domain | Strategy: Penn Medicine-mediated | Strategy: Family Heart Foundation-mediated |
|---|---|---|
Actor(s) | Penn Medicine via Way to Health (W2H) | Penn Medicine via Way to Health (used only for initial contact about the study, then participants are given warm hand-off to care navigator from Family Heart Foundation) Family Heart Foundation (FHF) via care navigator |
Action(s) | For Penn Medicine patients who have been diagnosed with familial hypercholesterolemia (FH; i.e., the “probands”): Provide education about FH and family cascade screening; explain optionsa for identifying and contacting living, first-degree biological relatives to invite them to complete screening for FH For relatives: Provide education about FH and cascade screening; explain options for completing screening (i.e., lipid panel); give instructions for completing selected screening option; offer free access to ‘results review’ phone call with an expert clinician | |
Target(s) of the action | Probands: Identifying relatives and selecting method(s) to contact relative(s) Relatives: Completing screening and results review phone call | |
Temporality | Within 6 months of proband randomization | |
Dose | Proband: Approximately 30 blocks of information (containing educational information and/or questions) sent via text message over the course of approximately 1–60 days, depending on proband’s answers and timeliness of responses; or one email linking to a survey containing all of the informational content and questions Relative: Direct contact: Approximately 16 blocks of information (containing educational information and/or questions; as described above under ‘Action(s)’ header) sent via text message over the course of approximately 1–30 days, depending on relative’s answers and timeliness of responses; or one email linking to a survey containing all of the informational content and questions Self-contact: Proband shares educational ‘Dear Family’ or ‘Dear Caregiver’ letter containing the same content delivered via direct contact (as described above under ‘Action(s)’ header) If a relative chooses to complete screening, they obtain results from a recent lipid panel or a new lipid panel, then complete a results consultation call with the study clinician lasting approximately 20 min | Proband: W2H initial outreach: Approximately six blocks of information sent via text message over the course of approximately 1–6 days, depending on proband’s answers and timeliness of responses; or one email linking to a webpage containing the same informational content FHF care navigator outreach: One phone call (or more if needed or requested) lasting approximately 15 min total Relative: Direct contact: One phone call (or more if needed or requested) lasting approximately 15–30 min total. Discussion covers topics as described above under ‘Action(s)’ header Self-contact: Proband shares educational ‘Dear Family’ or ‘Dear Caregiver’ letters containing the same content delivered via direct contact (as described above under ‘Action(s)’ header) If a relative chooses to complete screening, they obtain results from a recent lipid panel or a new lipid panel, then complete a results consultation call with the study clinician lasting approximately 20 min |
Implementation outcome(s) affected | Relatives’ completion of screening (i.e., sharing results from recent lipid panel or completing new lipid panel and completing results consultation call with study clinician) | |
Justification | Automated messages are a scalable and effective way to encourage health behaviors [50, 51, 84]; participants can engage with information on their own schedule | A foundation-led FH cascade screening program in the Netherlands was highly effective at increasing FH screening [36,37,38]; personalized contact can address complex barriers |