Care Models for the Genetic Evaluation of Dilated Cardiomyopathy at Sites of the DCM Consortium.
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Jordan Elizabeth, Moscarello Tia, Khafagy Hibatallah, Parker Patricia K, Grover Phoenix, Weinmann Simone, Liu Joseph, Nomo Alberta, Barker Naomi, Brown Emily E, Berthold Akos, Chowns Jessica, Christian Susan, Ekwurtzel Amy, Fan Judy, Kisling Monisha, Ma Daria, Miller Erin M, Sweeney Jessica, Reys Brian, Robles Nancy, Von Wald Lisa, Flowers Wendy, Hershberger Gregory L, Abraham Krishna G, Burke Michael A, Diamond Jamie, Drazner Mark H, Ewald Gregory A, Gottlieb Stephen S, Haas Garrie, Hofmeyer Mark, Huggins Gordon S, Jimenez Javier, Judge Daniel P, Katz Stuart, Kawana Masataka, Kransdorf Evan P, Martin Cindy M, Minami Elina, Owens Anjali, Shah Palak, Shenoy Chetan, Shore Supriya, Smart Frank, Stoller Douglas, Tallaj Jose, Tang W H Wilson, Wang Jessica, Wilcox Jane, Hershberger Ray E
Аннотация
METHODS: Principal investigators of the DCM Consortium convened at the Summer Scientific Symposium in July 2025. An electronic needs assessment was conducted among the 24 principal investigators in advance to define current care models by evaluating which genetic evaluation components recommended by the Heart Failure Society of America were conducted, by whom, and the time required for each component. Descriptive statistics were generated to characterize model features. Focus group discussions explored barriers and facilitators to implementing genetic services.
RESULTS: Four care models emerged from the principal investigator responses: model 1: Traditional-Synchronous (25%, n=6, requiring the most time per patient); model 2: Traditional-Asynchronous (33%, n=8); model 3: Externally Sourced (17%, n=4); and model 4: Physician/Advanced Practice Provider Conducted (25%, n=6, requiring the least time per patient). All models used genetic testing, whereas other components were implemented variably or not at all. Models 1 (15.7±4.1) and 2 (15.4±3.0) were rated more acceptable than model 4 (9.8±2.9; model 1 versus model 4; P=0.027; model 2 versus model 4; P=0.023). Notably, 88% of principal investigators used genetic information for treatment decisions, including implantable cardioverter defibrillator placement (83%; n=20) and cardiac transplantation (63%; n=15). Major facilitator themes from focus group discussions included having a genetic counselor as part of the heart failure team and developing authoritative standards directing provision of DCM genetic services. Barrier themes included operational challenges, limited personnel, clinician under-recognition, need for new service delivery models, and billing/reimbursement.
CONCLUSIONS: DCM genetic care models and components were highly variable across the 24 sites of the DCM Consortium, although all sites discussed similar factors that enable or hinder the implementation of genetic services for DCM. Understanding the basis of practice model variability may provide insight to yield more scalable care approaches.