Effectiveness of the Family Heart Talk Communication Tool in Improving Family Member Screening for Dilated Cardiomyopathy: Results of a Randomized Trial


Daniel D. Kinnamon, The Ohio State University, Columbus
Elizabeth Jordan, The Ohio State University, Columbus
Garrie J. Haas, The Ohio State University, Columbus
Mark Hofmeyer, Medstar Research Institute, Washington Hospital Center, DC
Evan Kransdorf, Smidt Heart Institute, Cedars-Sinai Medical Center, Los Angeles, CA
Gregory A. Ewald, Washington University, St. Louis, MO
Alanna A. Morris, Emory University School of Medicine, Atlanta, GA
Anjali Owens, University of Pennsylvania, Philadelphia
Brian Lowes, University of Nebraska Medical Center, Omaha
Douglas Stoller, University of Nebraska Medical Center, Omaha
W. H. Wilson Tang, Cleveland Clinic, OH
Sonia Garg, University of Texas Southwestern Medical Center, Dallas
Barry H. Trachtenberg, J.C. Walter Jr. Transplant Center, TX
Palak Shah, Inova Heart and Vascular Institute, Falls Church, VA
Salpy V. Pamboukian, University of Alabama, Birmingham
Nancy K. Sweitzer, University of Washington, Seattle
Matthew T. Wheeler, Washington University, St. Louis, MO
Jane E. Wilcox, Northwestern University Feinberg School of Medicine, Chicago, IL
Stuart Katz, New York University Langone Medical Center, NY
Stephen Pan, Westchester Medical Center & New York Medical College, Valhalla, NY
Javier Jimenez, Miami Cardiac & Vascular Institute, Baptist Health South, FL
Keith D. Aaronson, University of Michigan Medical Center, Ann Arbor
Daniel P. Fishbein, University of Washington, Seattle
Frank Smart, LSU Health Sciences Center - New OrleansFollow
Jessica Wang, University of California, Los Angeles Medical Center
Stephen S. Gottlieb, University of Maryland School of Medicine, Baltimore
Daniel P. Judge, Medical University of South Carolina, Charleston
Charles K. Moore, University of Mississippi Medical Center, Jackson
Jonathan O. Mead, The Ohio State University, Columbus

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Background: Managing disease risk among first-degree relatives of probands diagnosed with a heritable disease is central to precision medicine. A critical component is often clinical screening, which is particularly important for conditions like dilated cardiomyopathy (DCM) that remain asymptomatic until severe disease develops. Nonetheless, probands are frequently ill-equipped to disseminate genetic risk information that motivates at-risk relatives to complete recommended clinical screening. An easily implemented remedy for this key issue has been elusive. Methods: The DCM Precision Medicine Study developed Family Heart Talk, a booklet designed to help probands with DCM communicate genetic risk and the need for cardiovascular screening to their relatives. The effectiveness of the Family Heart Talk booklet in increasing cardiovascular clinical screening uptake among first-degree relatives was assessed in a multicenter, open-label, cluster-randomized, controlled trial. The primary outcome measured in eligible first-degree relatives was completion of screening initiated within 12 months after proband enrollment. Because probands randomized to the intervention received the booklet at the enrollment visit, eligible first-degree relatives were limited to those who were alive the day after proband enrollment and not enrolled on the same day as the proband. Results: Between June 2016 and March 2020, 1241 probands were randomized (1:1) to receive Family Heart Talk (n=621) or not (n=620) within strata defined by site and self-identified race/ethnicity (non-Hispanic Black, non-Hispanic White, or Hispanic). Final analyses included 550 families (n=2230 eligible first-degree relatives) in the Family Heart Talk arm and 561 (n=2416) in the control arm. A higher percentage of eligible first-degree relatives completed screening in the Family Heart Talk arm (19.5% versus 16.0%), and the odds of screening completion among these first-degree relatives were higher in the Family Heart Talk arm after adjustment for proband randomization stratum, sex, and age quartile (odds ratio, 1.30 [1-sided 95% CI, 1.08-∞]). A prespecified subgroup analysis did not find evidence of heterogeneity in the adjusted intervention odds ratio across race/ethnicity strata (P=0.90). Conclusions: Family Heart Talk, a booklet that can be provided to patients with DCM by clinicians with minimal additional time investment, was effective in increasing cardiovascular clinical screening among first-degree relatives of these patients. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT03037632.

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