title: A group approach to genetic counselling of cardiomyopathy patients: satisfaction and psychological outcomes sufficient for further implementation.
abstract: The introduction of next-generation sequencing in everyday clinical genetics practise is increasing the number of genetic disorders that can be confirmed at DNA-level, and consequently increases the possibilities for cascade screening. This leads to a greater need for genetic counselling, whereas the number of professionals available to provide this is limited. We therefore piloted group genetic counselling for symptomatic cardiomyopathy patients at regional hospitals, to assess whether this could be an acceptable alternative to individual counselling. We performed a cohort study with pre- and post-counselling patient measurements using questionnaires, supplemented with evaluations of the group counselling format by the professionals involved. Patients from eight regional hospitals in the northern part of the Netherlands were included. Questionnaires comprised patient characteristics, psychological measures (personal perceived control (PPC), state and trait anxiety inventory (STAI)), and satisfaction with counsellors, counselling content and design. In total, 82 patients (mean age 57.5 year) attended one of 13 group sessions. Median PPC and STAI scores showed significantly higher control and lower anxiety after the counselling. Patients reported they were satisfied with the counsellors, and almost 75% of patients were satisfied with the group counselling. Regional professionals were also, overall, satisfied with the group sessions. The genetics professionals were less satisfied, mainly because of their perceived large time investment and less-than-expected group interaction. Hence, a group approach to cardiogenetic counselling is feasible, accessible, and psychologically effective, and could be one possible approach to counselling the increasing patient numbers in cardiogenetics.
authors: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors: Ellen
authors: E
authors: Otten
authors: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors: Erwin
authors: E
authors: Birnie
authors: Department of Health Psychology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors: Adelita V
authors: AV
authors: Ranchor
authors: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors: J Peter
authors: JP
authors: van Tintelen
authors: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
authors: Irene M
authors: IM
authors: van Langen
mesh_terms: D000328:Adult; D000368:Aged; D002311:Cardiomyopathy, Dilated / Q000453:epidemiology / Q000235:genetics* / Q000523:psychology; D002312:Cardiomyopathy, Hypertrophic / Q000453:epidemiology / Q000235:genetics* / Q000523:psychology; D003362:Cost-Benefit Analysis; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010549:Personal Satisfaction; D011795:Surveys and Questionnaires
references: Circulation. 2013 Oct 1;128(14):1513-21
references: 23963746
references: Eur Heart J. 1999 Jan;20(2):93-102
references: 10099905
references: Discov Med. 2013 Jan;15(80):43-9
references: 23375013
references: Fam Cancer. 2012 Mar;11(1):97-106
references: 22057473
references: Br J Cancer. 1999 Feb;79(3-4):501-8
references: 10027320
references: Am J Med Genet A. 2006 Apr 15;140(8):843-50
references: 16532462
references: Fam Cancer. 2006;5(1):61-75
references: 16528610
references: J Genet Couns. 2007 Feb;16(1):85-96
references: 17295054
references: J Natl Cancer Inst. 2000 Aug 16;92(16):1345-51
references: 10944557
references: J Genet Couns. 2009 Feb;18(1):87-100
references: 19127417
references: Europace. 2011 Aug;13(8):1077-109
references: 21810866
references: J Am Board Fam Med. 2006 May-Jun;19(3):276-90
references: 16672681
references: J Am Coll Cardiol. 2012 Aug 21;60(8):705-15
references: 22796258
references: Am J Med Genet C Semin Med Genet. 2009 Aug 15;151C(3):191-9
references: 19621441
references: Genet Med. 2011 Nov;13(11):933-41
references: 21799430
references: Community Genet. 2003;6(2):84-7
references: 14560068
references: Genet Med. 2014 Aug;16(8):601-8
references: 24503780
references: BMC Womens Health. 2011;11:39
references: 21864353
references: Diabetes Care. 2012 Feb;35(2):242-7
references: 22210565
references: Eur J Heart Fail. 2013 Jun;15(6):628-36
references: 23349452
references: J Clin Oncol. 2005 May 20;23(15):3455-64
references: 15908654
references: Neth Heart J. 2010 Mar;18(3):144-59
references: 20390065
references: Br J Cancer. 2002 Jan 7;86(1):43-50
references: 11857010