title: Improving usual care after sudden death in the young with focus on inherited cardiac diseases (the CAREFUL study): a community-based intervention study.
abstract: Inherited cardiac diseases play an important role in sudden death (SD) in the young. Autopsy and cardiogenetic evaluation of relatives of young SD victims identifies relatives at risk. We studied the usual care after SD in the young aimed at identifying inherited cardiac disease, and assessed the efficacy of two interventions to improve this usual care.
  
  
  
  We conducted a community-based intervention study to increase autopsy rates of young SD victims aged 1-44 years and referral of their relatives to cardiogenetic clinics. In the Amsterdam study region, a 24/7 central telephone number and a website were available to inform general practitioners and coroners. In the Utrecht study region, they were informed by a letter and educational meetings. In two control regions usual care was monitored. Autopsy was performed in 169 of 390 registered SD cases (43.3%). Cardiogenetic evaluation of relatives was indicated in 296 of 390 cases (75.9%), but only 25 of 296 families (8.4%) attended a cardiogenetics clinic. Autopsy rates were 38.7% in the Amsterdam study region, 45.5% in the Utrecht study region, and 49.0% in the control regions. The proportion of families evaluated at cardiogenetics clinics in the Amsterdam study region, the Utrecht study region, and the control regions was 7.3, 9.9, and 8.8%, respectively.
  
  
  
  The autopsy rate in young SD cases in the Netherlands is low and few families undergo cardiogenetic evaluation to detect inherited cardiac diseases. Two different interventions did not improve this suboptimal situation substantially.
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands c.vanderwerf@amc.nl.
authors.forename: Christian
authors.initials: C
authors.lastname: van der Werf
authors.affiliation: Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands.
authors.forename: Anneke
authors.initials: A
authors.lastname: Hendrix
authors.affiliation: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Erwin
authors.initials: E
authors.lastname: Birnie
authors.affiliation: Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Michiel L
authors.initials: ML
authors.lastname: Bots
authors.affiliation: Department of Pathology, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Aryan
authors.initials: A
authors.lastname: Vink
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
authors.forename: Abdennasser
authors.initials: A
authors.lastname: Bardai
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
authors.forename: Marieke T
authors.initials: MT
authors.lastname: Blom
authors.affiliation: Regional Ambulance Service Hollands-Midden, Leiden, The Netherlands.
authors.forename: Jan
authors.initials: J
authors.lastname: Bosch
authors.affiliation: Regional Ambulance Service Utrecht, Utrecht, The Netherlands.
authors.forename: Wendy
authors.initials: W
authors.lastname: Bruins
authors.affiliation: Department of Forensic Medicine, Amsterdam Public Health Service, Amsterdam, The Netherlands.
authors.forename: C Kees
authors.initials: CK
authors.lastname: Das
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
authors.forename: Rudolph W
authors.initials: RW
authors.lastname: Koster
authors.affiliation: Department of Forensic Medicine, Public Health Service of Groningen, Groningen, The Netherlands.
authors.forename: Tatjana
authors.initials: T
authors.lastname: Naujocks
authors.affiliation: Department of Forensic Medicine, Public Health Service Hollands Noorden, Schagen, The Netherlands.
authors.forename: Balthasar
authors.initials: B
authors.lastname: Schaap
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands.
authors.forename: Hanno L
authors.initials: HL
authors.lastname: Tan
authors.affiliation: Department of Anaesthesiology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Ronald
authors.initials: R
authors.lastname: de Vos
authors.affiliation: Department of Forensic Medicine, Public Health Service Hollands Midden, Leiden, The Netherlands.
authors.forename: Philip
authors.initials: P
authors.lastname: de Vries
authors.affiliation: Department of Forensic Medicine, Public Health Service Midden-Nederland, Zeist, The Netherlands.
authors.forename: Frits
authors.initials: F
authors.lastname: Woonink
authors.affiliation: Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands Department of Cardiology, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Pieter A
authors.initials: PA
authors.lastname: Doevendans
authors.affiliation: Department of General Practice, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Henk C
authors.initials: HC
authors.lastname: van Weert
authors.affiliation: Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands.
authors.forename: Arthur A M
authors.initials: AA
authors.lastname: Wilde
authors.affiliation: Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands Department of Cardiology, Meander Medical Center, Amersfoort, The Netherlands.
authors.forename: Arend
authors.initials: A
authors.lastname: Mosterd
authors.affiliation: Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Irene M
authors.initials: IM
authors.lastname: van Langen
mesh_terms: D000293:Adolescent; D000328:Adult; D001344:Autopsy; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D003153:Community Health Services / Q000592:standards; D016757:Death, Sudden, Cardiac / Q000209:etiology* / Q000473:pathology / Q000517:prevention & control; D005190:Family; D005260:Female; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods* / Q000592:standards; D006331:Heart Diseases / Q000175:diagnosis / Q000235:genetics* / Q000401:mortality / Q000628:therapy; D040941:Heredity; D006801:Humans; D007223:Infant; D008297:Male; D009426:Netherlands; D010342:Patient Acceptance of Health Care; D010375:Pedigree; D010641:Phenotype; D011237:Predictive Value of Tests; D058996:Quality Improvement / Q000592:standards; D019984:Quality Indicators, Health Care / Q000592:standards; D012017:Referral and Consultation; D018570:Risk Assessment; D012307:Risk Factors; D055815:Young Adult
keywords: Autopsy; Epidemiology; Family; Genetics; Prevention; Sudden cardiac death; Sudden death; Sudden unexplained death syndrome