Literature DB >> 30680842

The impact of cardiovascular genetic counseling on patient empowerment.

Hannah E Ison1, Stephanie M Ware2,3, Tae-Hwi Schwantes-An2, Samantha Freeze4, Lindsey Elmore3, Katherine G Spoonamore3,5.   

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.
© 2019 National Society of Genetic Counselors.

Entities:  

Keywords:  Genetic Counseling Outcome Scale; cardiovascular genetic counseling; empowerment; genetic counseling; patient-reported outcome measures

Mesh:

Year:  2019        PMID: 30680842     DOI: 10.1002/jgc4.1050

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  7 in total

1.  2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families.

Authors:  Martin K Stiles; Arthur A M Wilde; Dominic J Abrams; Michael J Ackerman; Christine M Albert; Elijah R Behr; Sumeet S Chugh; Martina C Cornel; Karen Gardner; Jodie Ingles; Cynthia A James; Jyh-Ming Jimmy Juang; Stefan Kääb; Elizabeth S Kaufman; Andrew D Krahn; Steven A Lubitz; Heather MacLeod; Carlos A Morillo; Koonlawee Nademanee; Vincent Probst; Elizabeth V Saarel; Luciana Sacilotto; Christopher Semsarian; Mary N Sheppard; Wataru Shimizu; Jonathan R Skinner; Jacob Tfelt-Hansen; Dao Wu Wang
Journal:  Heart Rhythm       Date:  2020-10-19       Impact factor: 6.343

2.  2020 APHRS/HRS expert consensus statement on the investigation of decedents with sudden unexplained death and patients with sudden cardiac arrest, and of their families.

Authors:  Martin K Stiles; Arthur A M Wilde; Dominic J Abrams; Michael J Ackerman; Christine M Albert; Elijah R Behr; Sumeet S Chugh; Martina C Cornel; Karen Gardner; Jodie Ingles; Cynthia A James; Jyh-Ming Jimmy Juang; Stefan Kääb; Elizabeth S Kaufman; Andrew D Krahn; Steven A Lubitz; Heather MacLeod; Carlos A Morillo; Koonlawee Nademanee; Vincent Probst; Elizabeth V Saarel; Luciana Sacilotto; Christopher Semsarian; Mary N Sheppard; Wataru Shimizu; Jonathan R Skinner; Jacob Tfelt-Hansen; Dao Wu Wang
Journal:  J Arrhythm       Date:  2021-04-08

Review 3.  A review and definition of 'usual care' in genetic counseling trials to standardize use in research.

Authors:  Barbara B Biesecker; Sarah E Lillie; Laura M Amendola; Katherine E Donohue; Kelly M East; Ann Katherine M Foreman; Marian J Gilmore; Veronica Greve; Billie Liangolou; Julianne M O'Daniel; Jacqueline A Odgis; Shannon Rego; Bradley Rolf; Sarah Scollon; Sabrina A Suckiel; Jamilyn Zepp; Galen Joseph
Journal:  J Genet Couns       Date:  2020-12-05       Impact factor: 2.537

4.  User-focused data sharing agreements: a foundation for the genomic future.

Authors:  Carolyn Petersen
Journal:  JAMIA Open       Date:  2019-10-01

5.  What do we do and how do we do it? Assessing genetic counselling in the modern era.

Authors:  Laura Yeates; Alison McEwen; Jodie Ingles
Journal:  Eur J Hum Genet       Date:  2020-04-27       Impact factor: 4.246

6.  The stepwise process of integrating a genetic counsellor into primary care.

Authors:  Caitlin Slomp; Emily Morris; Morgan Price; Alison M Elliott; Jehannine Austin
Journal:  Eur J Hum Genet       Date:  2022-01-31       Impact factor: 5.351

Review 7.  Current state and future directions of genomic medicine in aortic dissection: A path to prevention and personalized care.

Authors:  Alana C Cecchi; Madeline Drake; Chrisanne Campos; Jake Howitt; Jonathan Medina; Scott M Damrauer; Sherene Shalhub; Dianna M Milewicz
Journal:  Semin Vasc Surg       Date:  2022-02-25       Impact factor: 1.222

  7 in total

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