Literature DB >> 30539690

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

Lisa L Shah1, Sandra Daack-Hirsch2, Anne L Ersig3, Anthony Paik4, Ferhaan Ahmad2, Janet Williams2.   

Abstract

The purpose of this study was to identify characteristics of family relationships associated with communication of genetic risk and testing behaviors among at-risk relatives in families with an inherited cardiac condition. Data were collected from 53 patients and parents of children with an inherited cardiac condition through interviews, pedigrees, and surveys. Associations were examined among family relationship characteristics and whether at-risk relatives were informed about their risk and tested for disease. Of 1,178 at-risk relatives, 52.5% were informed about their risk and 52.1% of those informed were tested. Emotional closeness, relationship quality, and communication frequency had significant bivariate associations with genetic risk communication. Communication frequency was associated with genetic risk communication and testing in multivariate models. This study provides new insight into the extent of genetic risk communication and testing in families with inherited cardiac conditions. Family relationships, especially communication frequency, are critical factors in family communication of genetic risk.

Entities:  

Keywords:  cardiomyopathy; cascade screening; disclosure (mesh); genetic risk communication; hypertrophic (mesh); long QT syndrome (mesh)

Year:  2018        PMID: 30539690      PMCID: PMC6561845          DOI: 10.1177/0193945918817039

Source DB:  PubMed          Journal:  West J Nurs Res        ISSN: 0193-9459            Impact factor:   1.967


  37 in total

Review 1.  Family communication about genetic risk: the little that is known.

Authors:  Brenda J Wilson; Karen Forrest; Edwin R van Teijlingen; Lorna McKee; Neva Haites; Eric Matthews; Sheila A Simpson
Journal:  Community Genet       Date:  2004

Review 2.  Process and outcome in communication of genetic information within families: a systematic review.

Authors:  Clara L Gaff; Angus J Clarke; Paul Atkinson; Stephanie Sivell; Glyn Elwyn; Rachel Iredale; Hazel Thornton; Joanna Dundon; Chris Shaw; Adrian Edwards
Journal:  Eur J Hum Genet       Date:  2007-07-04       Impact factor: 4.246

3.  Standardized human pedigree nomenclature: update and assessment of the recommendations of the National Society of Genetic Counselors.

Authors:  Robin L Bennett; Kathryn Steinhaus French; Robert G Resta; Debra Lochner Doyle
Journal:  J Genet Couns       Date:  2008-09-16       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

Review 5.  Hypertrophic cardiomyopathy in childhood.

Authors:  Barry J Maron
Journal:  Pediatr Clin North Am       Date:  2004-10       Impact factor: 3.278

6.  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

7.  Uptake of genetic counselling and predictive DNA testing in hypertrophic cardiomyopathy.

Authors:  Imke Christiaans; Erwin Birnie; Gouke J Bonsel; Arthur Am Wilde; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2008-05-14       Impact factor: 4.246

8.  A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning.

Authors:  Laura M Koehly; Susan K Peterson; Beatty G Watts; Kari K G Kempf; Sally W Vernon; Ellen R Gritz
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2003-04       Impact factor: 4.254

9.  Genetic testing in the long QT syndrome: development and validation of an efficient approach to genotyping in clinical practice.

Authors:  Carlo Napolitano; Silvia G Priori; Peter J Schwartz; Raffaella Bloise; Elena Ronchetti; Janni Nastoli; Georgia Bottelli; Marina Cerrone; Sergio Leonardi
Journal:  JAMA       Date:  2005-12-21       Impact factor: 56.272

Review 10.  Congenital long QT syndrome.

Authors:  Lia Crotti; Giuseppe Celano; Federica Dagradi; Peter J Schwartz
Journal:  Orphanet J Rare Dis       Date:  2008-07-07       Impact factor: 4.123

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  4 in total

1.  Retrospective Diagnosis of Congenital Long QT Syndrome in a Patient With Febrile Syncope.

Authors:  Kory S London; Jessica Zegre-Hemsey; Melanie Root; Alex Kleinmann; Jennifer L White
Journal:  J Emerg Nurs       Date:  2020-03       Impact factor: 1.836

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:  Heart Rhythm       Date:  2020-10-19       Impact factor: 6.343

3.  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

4.  How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

Authors:  Lieke Marleen van den Heuvel; Daphne Stemkens; Wendy A G van Zelst-Stams; Floor Willeboordse; Imke Christiaans
Journal:  J Genet Couns       Date:  2019-12-30       Impact factor: 2.537

  4 in total

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