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

Abstract

This international multidisciplinary document intends to provide clinicians with evidence-based practical patient-centered recommendations for evaluating patients and decedents with (aborted) sudden cardiac arrest and their families. The document includes a framework for the investigation of the family allowing steps to be taken, should an inherited condition be found, to minimize further events in affected relatives. Integral to the process is counseling of the patients and families, not only because of the emotionally charged subject, but because finding (or not finding) the cause of the arrest may influence management of family members. The formation of multidisciplinary teams is essential to provide a complete service to the patients and their families, and the varied expertise of the writing committee was formulated to reflect this need. The document sections were divided up and drafted by the writing committee members according to their expertise. The recommendations represent the consensus opinion of the entire writing committee, graded by Class of Recommendation and Level of Evidence. The recommendations were opened for public comment and reviewed by the relevant scientific and clinical document committees of the Asia Pacific Heart Rhythm Society (APHRS) and the Heart Rhythm Society (HRS); the document underwent external review and endorsement by the partner and collaborating societies. While the recommendations are for optimal care, it is recognized that not all resources will be available to all clinicians. Nevertheless, this document articulates the evaluation that the clinician should aspire to provide for patients with sudden cardiac arrest, decedents with sudden unexplained death, and their families.

Shown for reading. Its publisher allows quoting it, not republishing it.

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     Herman AR, Cheung C, Gerull B, Outcome of apparently unexplained cardiac arrest: results from investigation and follow-up of the prospective Cardiac Arrest Survivors with Preserved Ejection Fraction Registry. Circ Arrhythm Electrophysiol 2016;9:e003619.

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     Adler A, van der Werf C, Postema PG, The phenomenon of “QT stunning”: the abnormal QT prolongation provoked by standing persists even as the heart rate returns to normal in patients with long QT syndrome. Heart Rhythm 2012;9:901–908.

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     Dionne A, Fournier A, Dahdah N, Abrams D, Khairy P, Abadir S. Dynamic QT interval changes from supine to standing in healthy children. Can J Cardiol 2018; 34:66–72.

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     Viskin S, Postema PG, Bhuiyan ZA, The response of the QT interval to the brief tachycardia provoked by standing: a bedside test for diagnosing long QT syndrome. J Am Coll Cardiol 2010;55:1955–1961.

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     Krahn AD, Healey JS, Chauhan VS, Epinephrine infusion in the evaluation of unexplained cardiac arrest and familial sudden death: from the Cardiac Arrest Survivors with Preserved Ejection Fraction Registry. Circ Arrhythm Electrophysiol 2012;5:933–940.

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     Brugada R, Brugada J, Antzelevitch C, Sodium channel blockers identify risk for sudden death in patients with ST-segment elevation and right bundle branch block but structurally normal hearts. Circulation 2000; 101:510–515.

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     Beltrame JF, Crea F, Kaski JC, International standardization of diagnostic criteria for vasospastic angina. Eur Heart J 2017;38:2565–2568.

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     Vyas H, Hejlik J, Ackerman MJ. Epinephrine QT stress testing in the evaluation of congenital long-QT syndrome: diagnostic accuracy of the paradoxical QT response. Circulation 2006;113:1385–1392.

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     Rehm HL, Berg JS, Brooks LD, ClinGen: the clinical genome resource. N Engl J Med 2015;372:2235–2242.

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     Gersh BJ, Maron BJ, Bonow RO, 2011 ACCF/AHA guideline for the diagnosis and treatment of hypertrophic cardiomyopathy: executive summary: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation 2011;124:2761–2796.

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     Asatryan B, Medeiros-Domingo A. Molecular and genetic insights into progressive cardiac conduction disease. Europace 2019;21:1145–1158.

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     Quenin P, Kyndt F, Mabo P, Clinical yield of familial screening after sudden death in young subjects: the French experience. Circ Arrhythm Electrophysiol 2017;10:e005236.

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     Cornel MC, van El CG. Barriers and facilitating factors for implementation of genetic services: a public health perspective. Front Public Health 2017;5:195.

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     Charron P, Heron D, Gargiulo M, Prenatal molecular diagnosis in hypertrophic cardiomyopathy: report of the first case. Prenat Diagn 2004;24:701–703.

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     Harper JC, Wilton L, Traeger-Synodinos J, The ESHRE PGD Consortium: 10 years of data collection. Hum Reprod Update 2012;18:234–247.

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     Christian S, Somerville M, Huculak C, Atallah J. Practice variation among an international group of genetic counselors on when to offer predictive genetic testing to children at risk of an inherited arrhythmia or cardiomyopathy. J Genet Couns 2019;28:70–79.

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     Harris S, Cirino AL, Carr CW, The uptake of family screening in hypertrophic cardiomyopathy and an online video intervention to facilitate family communication. Mol Genet Genomic Med 2019;7:e940.

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     Adler A, Sadek MM, Chan AY, Patient outcomes from a specialized inherited arrhythmia clinic. Circ Arrhythm Electrophysiol 2016;9:e003440.

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     van El CG, Baccolini V, Piko P, Cornel MC. Stakeholder views on active cascade screening for familial hypercholesterolemia. Healthcare (Basel) 2018; 6:108.

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     Shah LL, Daack-Hirsch S. Family communication about genetic risk of hereditary cardiomyopathies and arrhythmias: an integrative review. J Genet Couns 2018;27:1022–1039.

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     Catchpool M, Ramchand J, Martyn M, A cost-effectiveness model of genetic testing and periodical clinical screening for the evaluation of families with dilated cardiomyopathy. Genet Med 2019;21:2815–2822.

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     Mak CM, Mok NS, Shum HC, Sudden arrhythmia death syndrome in young victims: a five-year retrospective review and two-year prospective molecular autopsy study by next-generation sequencing and clinical evaluation of their first-degree relatives. Hong Kong Med J 2019;25:21–29.

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     te Riele AS, James CA, Rastegar N, Yield of serial evaluation in at-risk family members of patients with ARVD/C. J Am Coll Cardiol 2014;64:293–301.

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     Hasdemir C, Juang JJ, Kose S, Coexistence of atrioventricular accessory pathways and drug-induced type 1 Brugada pattern. Pacing Clin Electrophysiol 2018;41:1078–1092.

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