title: Preferences of cardiologists and clinical geneticists for the future organization of genetic care in hypertrophic cardiomyopathy: a survey.
abstract: In view of the increasing demands for genetic counselling and DNA diagnostics in cardiogenetics, the roles of cardiologists and clinical geneticists in the delivery of care need to be redefined. We investigated the preferences of both groups of professionals with regard to the future allocation of six cardiogenetic responsibilities in counselling and testing, using hypertrophic cardiomyopathy (HCM) as a prevalent model disease. In this cross-sectional survey, the participants were Dutch cardiologists (n = 643) and clinical geneticists (n = 60), all members of professional societies. Response rates were 33 and 82%, respectively. In both groups, the majority preferred to perform most of the tasks described above in collaboration. Informing HCM patients about the genetics of HCM and requesting DNA testing in symptomatic patients was viewed by 43 and 35% of cardiologists, respectively, as their sole responsibility, however, and 39 and 59% of clinical geneticists did not object to these views. Both groups felt that the task of discussing the consequences of HCM for offspring and that of discussing the results of DNA diagnostics should be shared or performed by clinical geneticists. Both groups considered co-ordination of family screening the sole responsibility of clinical geneticists. Opinions on who should request DNA diagnostics in asymptomatic relatives were divided: 86% of clinical geneticists considered it their exclusive responsibility, 10% of cardiologists believed that this task could be performed individually by either group and 30% preferred to collaborate. Most professionals said that they would appreciate education programmes and clinical guidelines. Both cardiologists and clinical geneticists prefer to share rather than divide most cardiogenetic responsibilities in caring for HCM patients. Consequently, capacity problems in both groups are to be expected. To safeguard current professional standards in genetic counselling and testing, deployment of non-medical personnel might be essential.
authors.affiliation: Department of Clinical Genetics, Academic Medical Centre, Amsterdam, The Netherlands. i.m.vanlangen@amc.uva.nl
authors.forename: I M
authors.initials: IM
authors.lastname: van Langen
authors.forename: E
authors.initials: E
authors.lastname: Birnie
authors.forename: E
authors.initials: E
authors.lastname: Schuurman
authors.forename: H L
authors.initials: HL
authors.lastname: Tan
authors.forename: N
authors.initials: N
authors.lastname: Hofman
authors.forename: G J
authors.initials: GJ
authors.lastname: Bonsel
authors.forename: A A M
authors.initials: AA
authors.lastname: Wilde
mesh_terms: D001291:Attitude of Health Personnel; D002309:Cardiology / Q000193:education / Q000458:organization & administration*; D002312:Cardiomyopathy, Hypertrophic / Q000175:diagnosis / Q000235:genetics* / Q000628:therapy*; D003299:Cooperative Behavior; D005817:Genetic Counseling; D033142:Genetic Services / Q000458:organization & administration* / Q000706:statistics & numerical data; D005820:Genetic Testing; D005826:Genetics, Medical / Q000193:education / Q000458:organization & administration*; D006801:Humans; D009426:Netherlands; D010348:Patient Care Team / Q000458:organization & administration*; D011795:Surveys and Questionnaires