Why the study?
Individuals with HCM face risks of sudden cardiac death and stroke, requiring early identification, but the uptake of recommended family screening and methods to facilitate communication remain to be evaluated.
Does an online video intervention improve family communication and screening uptake among first-degree relatives of patients with hypertrophic cardiomyopathy?
Does an online video intervention improve family communication and screening uptake among first-degree relatives of patients with hypertrophic cardiomyopathy?
Despite specialized care, only about half of first-degree relatives of HCM patients undergo screening, and online video interventions may have limited impact on reaching unaware relatives.
Screening rates among first-degree HCM relatives remain low; leaves open whether video interventions can improve family communication or uptake.
BACKGROUND: Individuals with hypertrophic cardiomyopathy (HCM), even when asymptomatic, are at-risk for sudden cardiac death and stroke from arrhythmias, making it imperative to identify individuals affected by this familial disorder. Consensus guidelines recommend that first-degree relatives (FDRs) of a person with HCM undergo serial cardiovascular evaluations. METHODS: We determined the uptake of family screening in patients with HCM and developed an online video intervention to facilitate family communication and screening. Family screening and genetic testing data were collected through a prospective quality improvement initiative, a standardized clinical assessment and management plan (SCAMP), utilized in an established cardiovascular genetics clinic. Patients were prescribed an online video if screening of their FDRs was incomplete and a pilot study on video utilization and family communication was conducted. RESULTS: Two-hundred and sixteen probands with HCM were enrolled in SCAMP Phase I and 190 were enrolled in SCAMP Phase II. In both phases, probands reported that 51% of FDRs had been screened (382/749 in Phase I, 258/504 in Phase II). Twenty patients participated in a pilot study on video utilization and family communication. Nine participants reported watching the video and six participants reported sharing the video with relatives; however only one participant reported sharing the video with relatives who were not yet aware of the diagnosis of HCM in the family. CONCLUSION: Despite care in a specialized cardiovascular genetics clinic, approximately one half of FDRs of patients with HCM remained unscreened. Online interventions and videos may serve as supplemental tools for patients communicating genetic risk information to relatives.
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Harris et al. (2019) studied this question.
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