Literature DB >> 31548222

Psychological Issues in Managing Families with Inherited Cardiovascular Diseases.

Jodie Ingles1,2,3.   

Abstract

The field of cardiovascular genetic counseling has evolved dramatically in recent years largely to manage the unique psychological needs of the inherited cardiovascular disease patient population. For many, there can be difficulty in coming to terms with a diagnosis, whether it be adjusting to lifestyle recommendations such as exclusion from competitive sports or living with a small but remarkable risk of sudden cardiac death. For those considered at risk of life-threatening ventricular arrhythmias, the decision to have an implantable cardioverter defibrillator can be difficult. Living with the device, especially for those who are young and those who receive multiple shocks, can precipitate psychological distress and poor adaptation to the device. Family members who experience a sudden cardiac death of a young relative have a significant risk of poor psychological outcomes. The roles of the cardiac genetic counselor in facilitating patients' adaptation to their diagnoses and management and recognizing when additional support from a clinical psychologist is needed are key to ensuring families receive the best possible care.
Copyright © 2020 Cold Spring Harbor Laboratory Press; all rights reserved.

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Year:  2020        PMID: 31548222      PMCID: PMC7461768          DOI: 10.1101/cshperspect.a036558

Source DB:  PubMed          Journal:  Cold Spring Harb Perspect Med        ISSN: 2157-1422            Impact factor:   5.159


  52 in total

1.  Posttraumatic Stress and Prolonged Grief After the Sudden Cardiac Death of a Young Relative.

Authors:  Jodie Ingles; Catherine Spinks; Laura Yeates; Kevin McGeechan; Nadine Kasparian; Christopher Semsarian
Journal:  JAMA Intern Med       Date:  2016-03       Impact factor: 21.873

2.  Effects of implantable cardioverter/defibrillator shock and antitachycardia pacing on anxiety and quality of life: A MADIT-RIT substudy.

Authors:  Alessandro Paoletti Perini; Valentina Kutyifa; Peter Veazie; James P Daubert; Claudio Schuger; Wojciech Zareba; Scott McNitt; Spencer Rosero; Christine Tompkins; Luigi Padeletti; Arthur J Moss
Journal:  Am Heart J       Date:  2017-03-20       Impact factor: 4.749

3.  Quality of life metrics in arrhythmogenic right ventricular cardiomyopathy patients: The impact of age, shock and sex.

Authors:  Ashley C Rhodes; Brittney Murray; Crystal Tichnell; Cynthia A James; Hugh Calkins; Samuel F Sears
Journal:  Int J Cardiol       Date:  2017-08-14       Impact factor: 4.164

4.  Can parents adjust to the idea that their child is at risk for a sudden death?: Psychological impact of risk for long QT syndrome.

Authors:  Karin S W H Hendriks; F J M Grosfeld; J P van Tintelen; I M van Langen; A A M Wilde; J van den Bout; H F J ten Kroode
Journal:  Am J Med Genet A       Date:  2005-10-01       Impact factor: 2.802

Review 5.  Sudden cardiac death in the young: the molecular autopsy and a practical approach to surviving relatives.

Authors:  Christopher Semsarian; Jodie Ingles; Arthur A M Wilde
Journal:  Eur Heart J       Date:  2015-03-11       Impact factor: 29.983

6.  Living with long QT syndrome: a qualitative study of coping with increased risk of sudden cardiac death.

Authors:  Janice Andersen; Nina Øyen; Cathrine Bjorvatn; Eva Gjengedal
Journal:  J Genet Couns       Date:  2008-08-22       Impact factor: 2.537

7.  Pre-symptomatic genetic testing for inherited cardiac conditions: a qualitative exploration of psychosocial and ethical implications.

Authors:  Elizabeth Ormondroyd; Stephanie Oates; Michael Parker; Edward Blair; Hugh Watkins
Journal:  Eur J Hum Genet       Date:  2013-05-01       Impact factor: 4.246

8.  A Control Theory-Based Pilot Intervention toIncrease Physical Activity in Patients WithHypertrophic Cardiomyopathy.

Authors:  Joanna Sweeting; Jodie Ingles; Kylie Ball; Christopher Semsarian
Journal:  Am J Cardiol       Date:  2018-06-08       Impact factor: 2.778

9.  Factors influencing uptake of familial long QT syndrome genetic testing.

Authors:  Charlotte Burns; Julie McGaughran; Andrew Davis; Christopher Semsarian; Jodie Ingles
Journal:  Am J Med Genet A       Date:  2015-11-06       Impact factor: 2.802

10.  Not all beta-blockers are equal in the management of long QT syndrome types 1 and 2: higher recurrence of events under metoprolol.

Authors:  Priya Chockalingam; Lia Crotti; Giulia Girardengo; Jonathan N Johnson; Katy M Harris; Jeroen F van der Heijden; Richard N W Hauer; Britt M Beckmann; Carla Spazzolini; Roberto Rordorf; Annika Rydberg; Sally-Ann B Clur; Markus Fischer; Freek van den Heuvel; Stefan Kääb; Nico A Blom; Michael J Ackerman; Peter J Schwartz; Arthur A M Wilde
Journal:  J Am Coll Cardiol       Date:  2012-10-17       Impact factor: 24.094

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  5 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.  Genetic Counseling and the Central Tenets of Practice.

Authors:  Barbara Biesecker
Journal:  Cold Spring Harb Perspect Med       Date:  2020-03-02       Impact factor: 6.915

Review 4.  A Person-Centered Approach to Cardiovascular Genetic Testing.

Authors:  Julia Platt
Journal:  Cold Spring Harb Perspect Med       Date:  2020-07-01       Impact factor: 5.159

5.  Psychosocial Impact of Predictive Genetic Testing in Hereditary Heart Diseases: The PREDICT Study.

Authors:  Céline Bordet; Sandrine Brice; Carole Maupain; Estelle Gandjbakhch; Bertrand Isidor; Aurélien Palmyre; Alexandre Moerman; Annick Toutain; Linda Akloul; Anne-Claire Brehin; Caroline Sawka; Caroline Rooryck-Thambo; Elise Schaefer; Karine Nguyen; Delphine Dupin Deguine; Cécile Rouzier; Gipsy Billy; Krystelle Séné; Isabelle Denjoy; Bruno Leheup; Marc Planes; Jean-Michael Mazzella; Stéphanie Staraci; Mélanie Hebert; Elsa Le Boette; Claire-Cécile Michon; Marie-Lise Babonneau; Angélique Curjol; Amine Bekhechi; Rafik Mansouri; Ibticem Raji; Jean-François Pruny; Véronique Fressart; Flavie Ader; Pascale Richard; Sophie Tezenas du Montcel; Marcela Gargiulo; Philippe Charron
Journal:  J Clin Med       Date:  2020-05-06       Impact factor: 4.241

  5 in total

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