Cardiovascular

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

TL;DR

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

Key Findings

Empowerment increased significantly after cardiovascular genetic counseling.

  • Genetic Counseling Outcome Scale-24 (GCOS-24) score change was +5.94±11.6 (P<0.001).
  • 890 adults attending a first outpatient CVGC appointment at 8 US and Canadian medical centers completed questionnaires.
  • Post-counseling data were collected up to 4 weeks after CVGC but before the results of any ordered genetic tests were returned, to separate the effect of counseling from that of test results.

Genetic-related worry decreased significantly after cardiovascular genetic counseling.

  • Modified Cancer Worry Scale score change was -0.40±3.55 (P=0.002).
  • Worry was measured before and up to 4 weeks after CVGC, before genetic test results were returned.

Cardiac fear decreased after counseling, but overall cardiac anxiety did not change.

  • The Cardiac Anxiety Questionnaire (CAQ) fear subscale changed by -0.034±0.46 (P=0.033).
  • Whole-scale CAQ showed no change (0.013±0.34; P=0.29).

Worry decreased most in patients with less formal education, those with an arrhythmia indication, and those who were at-risk family members.

  • In linear regression, less formal education was associated with greater worry reduction (P=0.0021).
  • Arrhythmia indication was associated with greater worry reduction (P=0.013).
  • Being an at-risk family member was associated with greater worry reduction (P=0.016).

The strength of the genetic counselor:patient alliance was not associated with change in worry.

  • Alliance was measured with the Working Alliance Inventory-patient.
  • In the worry regression model, alliance had no impact.

A stronger genetic counselor:patient alliance was strongly associated with a larger increase in empowerment.

  • The association between alliance and change in empowerment was P<0.001 in linear regression.
  • This contrasts with the lack of association between alliance and worry change.

The study is a large multicenter, multiprovider evaluation of CVGC psychosocial outcomes, addressing a gap where few small studies had characterized them.

  • Guidelines recommend genetic counseling for potentially inherited cardiomyopathies, channelopathies, aortopathies, and dyslipidemias.
  • The MCVGC-GO study is a longitudinal survey-based design with pre- and post-counseling data collection.
  • The authors conclude the findings suggest opportunities for optimizing CVGC services, though the design is observational.

What This Means

This study looked at what happens to people's feelings after they attend a first genetic counseling visit for a possibly inherited heart condition, such as a cardiomyopathy, an irregular heart rhythm disorder, an aortic condition, or high cholesterol of genetic origin. Researchers surveyed 890 adults at 8 medical centers in the US and Canada before the visit and again up to 4 weeks after it, but before any genetic test results came back. This allowed them to look at the effect of the counseling itself rather than the effect of test results. After counseling, people reported feeling more empowered (more in control and better able to cope) and less worried about the genetic condition. They also reported slightly less fear related to their heart, though their overall heart-related anxiety did not change. Worry dropped the most among people with less formal education, people being seen for an arrhythmia, and relatives who were at risk but had not been diagnosed themselves. How strong the relationship was between the patient and the genetic counselor did not affect worry, but a stronger relationship was strongly linked to a bigger gain in empowerment. This research suggests genetic counseling for heart conditions is associated with meaningful psychological benefits, and that the quality of the counselor-patient relationship may matter for how empowered patients feel. Because the study was observational and did not compare counseled patients with an uncounseled group, it cannot prove that counseling caused the changes. The findings may still help guide how these services are designed and delivered.

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Citation

Murray B, Gordon C, Christian S, Dzwiniel T, Tichnell C, Brown E, et al.. (2026). Cardiovascular Genetic Counseling Is Associated With Improved Patient-Reported Outcomes Across Clinical Indications and Settings.. Circulation. Genomic and precision medicine. https://doi.org/10.1161/CIRCGEN.125.005514