Literature DB >> 29492742

Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review.

Lisa L Shah1, Sandra Daack-Hirsch2.   

Abstract

Screening for hereditary cardiomyopathies and arrhythmias (HCA) may enable early detection, treatment, targeted surveillance, and result in effective prevention of debilitating complications and sudden cardiac death. Screening at-risk family members for HCA is conducted through cascade screening. Only half of at-risk family members are screened for HCA. To participate in screening, at-risk family members must be aware of their risk. This often relies on communication from diagnosed individuals to their relatives. However, family communication is not well understood and is ripe for developing interventions to improve screening rates. Until very recently, family communication of genetic risk has been mostly studied in non-cardiac disease. Using this non-cardiac literature, we developed the family communication of genetic risk (FCGR) conceptual framework. The FCGR has four main elements of the communication process: influential factors, communication strategies, communication occurrence, and reaction to communication. Using the FCGR, we conducted an integrated review of the available literature on genetic risk communication in HCA families. Descriptive analysis of 12 articles resulted in the development of categories describing details of the FCGR elements in the context of HCA. This review synthesizes what is known about influential factors, communication strategies, communication occurrence, and outcomes of communication in the context of HCA.

Entities:  

Keywords:  Cascade screening; Disclosure; Family communication; Genetic risk; Hypertrophic cardiomyopathy; Inherited arrhythmia; Inherited cardiomyopathies; Long QT syndrome; Sudden cardiac death

Mesh:

Year:  2018        PMID: 29492742      PMCID: PMC6113126          DOI: 10.1007/s10897-018-0225-9

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


  33 in total

Review 1.  Communicating genetic risk information within families: a review.

Authors:  Mel Wiseman; Caroline Dancyger; Susan Michie
Journal:  Fam Cancer       Date:  2010-12       Impact factor: 2.375

2.  Making genetics not so important: family work in dealing with familial hypertrophic cardiomyopathy.

Authors:  Els Geelen; Ine Van Hoyweghen; Klasien Horstman
Journal:  Soc Sci Med       Date:  2010-06-25       Impact factor: 4.634

3.  Family Communication in Inherited Cardiovascular Conditions in Ireland.

Authors:  Sinead Whyte; Andrew Green; Marion McAllister; Hannah Shipman
Journal:  J Genet Couns       Date:  2016-06-08       Impact factor: 2.537

4.  'Coming down the line'-- patients' understanding of their family history of common chronic disease.

Authors:  Fiona M Walter; Jon Emery
Journal:  Ann Fam Med       Date:  2005 Sep-Oct       Impact factor: 5.166

5.  2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC). Developed with the special contribution of the Heart Failure Association (HFA) of the ESC.

Authors:  Piotr Ponikowski; Adriaan A Voors; Stefan D Anker; Héctor Bueno; John G F Cleland; Andrew J S Coats; Volkmar Falk; José Ramón González-Juanatey; Veli-Pekka Harjola; Ewa A Jankowska; Mariell Jessup; Cecilia Linde; Petros Nihoyannopoulos; John T Parissis; Burkert Pieske; Jillian P Riley; Giuseppe M C Rosano; Luis M Ruilope; Frank Ruschitzka; Frans H Rutten; Peter van der Meer
Journal:  Eur J Heart Fail       Date:  2016-05-20       Impact factor: 15.534

6.  Disclosing Genetic Information to Family Members About Inherited Cardiac Arrhythmias: An Obligation or a Choice?

Authors:  Rick D Vavolizza; Isha Kalia; Kathleen Erskine Aaron; Louise B Silverstein; Dorit Barlevy; David Wasserman; Christine Walsh; Robert W Marion; Siobhan M Dolan
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

7.  Cardiovascular monitoring of children and adolescents with heart disease receiving medications for attention deficit/hyperactivity disorder [corrected]: a scientific statement from the American Heart Association Council on Cardiovascular Disease in the Young Congenital Cardiac Defects Committee and the Council on Cardiovascular Nursing.

Authors:  Victoria L Vetter; Josephine Elia; Christopher Erickson; Stuart Berger; Nathan Blum; Karen Uzark; Catherine L Webb
Journal:  Circulation       Date:  2008-04-21       Impact factor: 29.690

8.  "Family matters": a conceptual framework for genetic testing in children.

Authors:  Allyn McConkie-Rosell; Gail A Spiridigliozzi
Journal:  J Genet Couns       Date:  2004-02       Impact factor: 2.537

Review 9.  Interdisciplinary psychosocial care for families with inherited cardiovascular diseases.

Authors:  Colleen Caleshu; Nadine A Kasparian; Katharine S Edwards; Laura Yeates; Christopher Semsarian; Marco Perez; Euan Ashley; Christian J Turner; Joshua W Knowles; Jodie Ingles
Journal:  Trends Cardiovasc Med       Date:  2016-04-28       Impact factor: 6.677

10.  Family communication in a population at risk for hypertrophic cardiomyopathy.

Authors:  Brittany Batte; Jane P Sheldon; Patricia Arscott; Darcy J Huismann; Lisa Salberg; Sharlene M Day; Beverly M Yashar
Journal:  J Genet Couns       Date:  2014-10-12       Impact factor: 2.537

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  10 in total

1.  Family Relationships Associated With Communication and Testing for Inherited Cardiac Conditions.

Authors:  Lisa L Shah; Sandra Daack-Hirsch; Anne L Ersig; Anthony Paik; Ferhaan Ahmad; Janet Williams
Journal:  West J Nurs Res       Date:  2018-12-12       Impact factor: 1.967

Review 2.  Communal Coping as a Strategy to Enhance Family Engagement in Dilated Cardiomyopathy.

Authors:  Wylie Burke; Shelly R Hovick; Elizabeth Jordan; Hanyu Ni; Daniel D Kinnamon; Ray E Hershberger
Journal:  Circ Genom Precis Med       Date:  2022-05-10

Review 3.  A systematic review of theory-informed strategies used in interventions fostering family genetic risk communication.

Authors:  Jingsong Zhao; Yue Guan; Colleen M McBride
Journal:  Patient Educ Couns       Date:  2022-03-11

4.  Do research participants share genomic screening results with family members?

Authors:  Julia Wynn; Hila Milo Rasouly; Tania Vasquez-Loarte; Akilan M Saami; Robyn Weiss; Sonja I Ziniel; Paul S Appelbaum; Ellen Wright Clayton; Kurt D Christensen; David Fasel; Robert C Green; Heather S Hain; Margaret Harr; Christin Hoell; Iftikhar J Kullo; Kathleen A Leppig; Melanie F Myers; Joel E Pacyna; Emma F Perez; Cynthia A Prows; Alanna Kulchak Rahm; Gemme Campbell-Salome; Richard R Sharp; Maureen E Smith; Georgia L Wiesner; Janet L Williams; Carrie L Blout Zawatsky; Ali G Gharavi; Wendy K Chung; Ingrid A Holm
Journal:  J Genet Couns       Date:  2021-10-19       Impact factor: 2.717

5.  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

6.  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

7.  Outcomes of Pediatric Patients With Defibrillators Following Initial Presentation With Sudden Cardiac Arrest.

Authors:  Jeffrey A Robinson; Martin J LaPage; Joseph Atallah; Gregory Webster; Christina Y Miyake; Christopher Ratnasamy; Nicholas J Ollberding; Shaun Mohan; Nicholas H Von Bergen; Christopher L Johnsrude; Jason M Garnreiter; David S Spar; Richard J Czosek
Journal:  Circ Arrhythm Electrophysiol       Date:  2021-01-05

8.  Screening of MYH7 gene mutation sites in hypertrophic cardiomyopathy and its significance.

Authors:  Hui-Ting Liu; Fang-Fang Ji; Ling Wei; An-Jun Zuo; Yu-Xiu Gao; Lin Qi; Bu Jin; Ji-Gang Wang; Peng Zhao
Journal:  Chin Med J (Engl)       Date:  2019-12-05       Impact factor: 2.628

9.  Family genetic result communication in rare and undiagnosed disease communities: Understanding the practice.

Authors:  Courtney M Studwell; Emily G Kelley; Janet S Sinsheimer; Christina G S Palmer; Kimberly LeBlanc
Journal:  J Genet Couns       Date:  2020-10-27       Impact factor: 2.537

10.  Impact of Genetic Testing for Cardiomyopathy on Emotional Well-Being and Family Dynamics: A Study of Parents and Adolescents.

Authors:  Priyanka Ahimaz; Maya Sabatello; Min Qian; Aijin Wang; Erin M Miller; Ashley Parrott; Ashwin K Lal; Kathryn C Chatfield; Joseph W Rossano; Stephanie M Ware; John J Parent; Paul Kantor; Lisa Yue; Julia Wynn; Teresa M Lee; Linda J Addonizio; Paul S Appelbaum; Wendy K Chung
Journal:  Circ Genom Precis Med       Date:  2021-07-13
  10 in total

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