DOI: 10.1161/circgen.125.005514 ISSN: 2574-8300

Cardiovascular Genetic Counseling Is Associated With Improved Patient-Reported Outcomes Across Clinical Indications and Settings

Brittney Murray, Catherine Gordon, Susan Christian, Tara Dzwiniel, Crystal Tichnell, Emily Brown, Gretchen MacCarrick, Rebecca McClellan, Chloe Reuter, Hannah Ison, Jennefer Carter, Tia Moscarello, Ryan Murtha, Mitchel Pariani, Julia Platt, Christina Rigelsky, Diane Clements, Paul Crawford, Joseph Liu, Elizabeth Jordan, Robyn J. Hylind, Eugene K. Wong, Sarah Wang, Zoe Lindsay-Mills, Megan Betts, Eric Tricou, Amy C. Sturm, Adam H. Buchanan, Sara Fitzgerald-Butt, Benjamin M. Helm, Laura Yeates, Colleen Caleshu, Jodie Ingles, Lisa R. Yanek, Cynthia A. James
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BACKGROUND:

Contemporary guidelines recommend genetic counseling for potentially inherited cardiomyopathies, channelopathies, aortopathies, and dyslipidemias, but few small studies characterize cardiovascular genetic counseling (CVGC) outcomes, impeding efforts to improve CVGC service delivery. We aimed to (1) quantify psychosocial CVGC outcomes, (2) identify clinical, demographic, and service delivery characteristics associated with the extent of benefit from CVGC, and (3) determine how outcomes are associated with patient-reported quality of the genetic counselor:patient alliance.

METHODS:

The MCVGC-GO (Multicenter Cardiovascular Genetic Counseling Outcomes Study) is a longitudinal survey-based study with pre- and post- genetic counseling data collection. Eight hundred ninety adults attending a first outpatient CVGC appointment at 8 United States and Canadian medical centers completed questionnaires assessing empowerment (Genetic Counseling Outcome Scale-24), worry (modified Cancer Worry Scale), cardiac anxiety (Cardiac Anxiety Questionnaire [CAQ]), and genetic counselor:patient alliance (Working Alliance Inventory–patient) before and up to 4 weeks post-CVGC, but before results of genetic tests ordered were returned to decouple CVGC and genetic test result impact.

RESULTS:

Following CVGC, empowerment increased (Genetic Counseling Outcome Scale score change, +5.94±11.6; P <0.001), worry decreased (Cancer Worry Scale score change, −0.40±3.55; P =0.002), and cardiac fear decreased (CAQ fear subscale change, −0.034±0.46; P =0.033) with no change in whole-scale CAQ (0.013±0.34; P =0.29). In linear regression, worry decreased most in patients with less formal education ( P =0.0021), with an arrhythmia indication ( P =0.013), and who were at-risk family members ( P =0.016) and the strength of the genetic counselor:patient alliance had no impact. In contrast, the genetic counselor:patient alliance was strongly positively associated with change in empowerment ( P <0.001).

CONCLUSIONS:

This observational, multicenter, multiprovider study provides foundational evidence that CVGC is associated with increased empowerment and decreased worry in adults attending outpatient CVGC and suggests opportunities for optimizing CVGC services.

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