Implementing Precision Medicine for Dilated Cardiomyopathy: Insights From the DCM Consortium

Clinical genetic evaluation of dilated cardiomyopathy (DCM) is implemented variably or not at all. Identifying needs and barriers to genetic evaluations will enable strategies to enhance precision medicine care. Cardiologist investigators of the DCM Consortium from US advanced heart failure/transplant (HF/TX) programs conducted an online survey in June 2024 to collect demographics, training, program characteristics, genetic evaluation practices, and implementation needs for DCM. An in-person discussion followed. Twenty-five cardiologists (28% female, 12% Hispanic, 68% White) participated in the survey and 15 in the discussion; genetics training backgrounds varied greatly. Clinical genetic testing for DCM was conducted at all institutions with annual patient uptake ranging from 5%-70% (median 25%). Thirteen respondents (52%) did not use selection criteria for offering testing in their personal practice whereas others selected patients based on specific clinical and family history data. Eight (32%) ordered testing by themselves, and the remainder had testing managed mostly by a genetic counselor or others with genetic expertise (16/17; 94%). Six themes were distilled from open-ended responses, including access to genetics services, navigating uncertainty, knowledge needs, cost concerns, family-based care barriers, and institutional infrastructure limitations. Following an in-person discussion, four areas were identified for focused effort: improved reimbursement for genetic services, genetic counselor integration with HF/TX teams, improved provider education resources, and more research to find missing heritability and to resolve uncertain results. This needs assessment of the DCM Consortium underscores the implementation challenges in the provision of DCM genetic evaluations in HF/TX programs. Targeted plans to facilitate precision medicine for DCM are needed.