Christian van der Werf1, Anneke Hendrix2, Erwin Birnie3, Michiel L Bots4, Aryan Vink5, Abdennasser Bardai6, Marieke T Blom6, Jan Bosch7, Wendy Bruins8, C Kees Das9, Rudolph W Koster6, Tatjana Naujocks10, Balthasar Schaap11, Hanno L Tan6, Ronald de Vos12, Philip de Vries13, Frits Woonink14, Pieter A Doevendans15, Henk C van Weert16, Arthur A M Wilde17, Arend Mosterd18, Irene M van Langen3. 1. Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands c.vanderwerf@amc.nl. 2. Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands. 3. Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. 4. Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands. 5. Department of Pathology, University Medical Center Utrecht, Utrecht, The Netherlands. 6. Department of Clinical and Experimental Cardiology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. 7. Regional Ambulance Service Hollands-Midden, Leiden, The Netherlands. 8. Regional Ambulance Service Utrecht, Utrecht, The Netherlands. 9. Department of Forensic Medicine, Amsterdam Public Health Service, Amsterdam, The Netherlands. 10. Department of Forensic Medicine, Public Health Service of Groningen, Groningen, The Netherlands. 11. Department of Forensic Medicine, Public Health Service Hollands Noorden, Schagen, The Netherlands. 12. Department of Anaesthesiology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. 13. Department of Forensic Medicine, Public Health Service Hollands Midden, Leiden, The Netherlands. 14. Department of Forensic Medicine, Public Health Service Midden-Nederland, Zeist, The Netherlands. 15. Interuniversity Cardiology Institute of the Netherlands, Utrecht, The Netherlands Department of Cardiology, University Medical Center Utrecht, Utrecht, The Netherlands. 16. Department of General Practice, Academic Medical Center, Amsterdam, The Netherlands. 17. 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. 18. 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.
Abstract
AIMS: 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. METHODS AND RESULTS: 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. CONCLUSIONS: 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. Published on behalf of the European Society of Cardiology. All rights reserved.
AIMS: 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. METHODS AND RESULTS: 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. CONCLUSIONS: 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. Published on behalf of the European Society of Cardiology. All rights reserved.
Authors: Kristina Rücklová; Martin Dobiáš; Matěj Bílek; Štěpánka Pohlová Kučerová; Markéta Kulvajtová; Terézia Tavačová; Ivan Nagy; Petr Tomášek Journal: Cent Eur J Public Health Date: 2022-03 Impact factor: 1.163
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
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
Authors: Florence Fellmann; Carla G van El; Philippe Charron; Katarzyna Michaud; Heidi C Howard; Sarah N Boers; Angus J Clarke; Anne-Marie Duguet; Francesca Forzano; Silke Kauferstein; Hülya Kayserili; Anneke Lucassen; Álvaro Mendes; Christine Patch; Dragica Radojkovic; Emmanuelle Rial-Sebbag; Mary N Sheppard; Anne-Marie Tassé; Sehime G Temel; Antti Sajantila; Cristina Basso; Arthur A M Wilde; Martina C Cornel Journal: Eur J Hum Genet Date: 2019-06-24 Impact factor: 4.246