The impact of cardiovascular genetic counseling on patient empowerment

Hannah E. Ison, Stephanie M. Ware, Tae Hwi Schwantes-An, Samantha Freeze, Lindsey Elmore, Katherine G. Spoonamore

Research output: Contribution to journalArticle

4 Scopus citations

Abstract

Cardiovascular genetic counseling (CVGC) is recommended for a variety of inherited heart conditions; however, its impact on patient empowerment has not been assessed. The Genetic Counseling Outcome Scale (GCOS) is a validated patient reported outcome tool which measures empowerment to capture the impact of clinical genetics services. As a routine clinical practice at our center, adult patients attending a CVGC appointment complete the 24-item GCOS survey and a 5-item survey on knowledge of cardiac surveillance recommendations for relatives prior to the clinic visit. To investigate the effect of CVGC, we contacted participants after the appointment to repeat these surveys prior to genetic test result disclosure. Forty-two participants completed pre- and post-GC surveys. The mean difference between pre- and post-GC empowerment scores was 17.5 points (mean pre-GC score = 118.5, mean post-GC score = 136, p < 0.0001; effect size, d = 0.94). Forty percent of individuals (17/42) were aware of surveillance recommendations for at-risk family members prior to GC; this increased to 76% of individuals (32/42) post-GC (p < 0.01). This is the first study to explore patient empowerment before and after GC in a cardiology setting. The results demonstrate a significant increase in empowerment and awareness of recommendations for at-risk relatives as a result of CVGC. This study demonstrates the utility of CVGC in patient care.

Original languageEnglish (US)
Pages (from-to)570-577
Number of pages8
JournalJournal of Genetic Counseling
Volume28
Issue number3
DOIs
StatePublished - Jun 2019

Keywords

  • Genetic Counseling Outcome Scale
  • cardiovascular genetic counseling
  • empowerment
  • genetic counseling
  • patient-reported outcome measures

ASJC Scopus subject areas

  • Genetics(clinical)

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    Ison, H. E., Ware, S. M., Schwantes-An, T. H., Freeze, S., Elmore, L., & Spoonamore, K. G. (2019). The impact of cardiovascular genetic counseling on patient empowerment. Journal of Genetic Counseling, 28(3), 570-577. https://doi.org/10.1002/jgc4.1050