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Reasons for refusing diagnostic tests and therapeutic recommendations and associated complications in inherited heart diseases. The RELUCTANT study.

Authors
  • López Cuenca, David1
  • Orenes Moreno, María2
  • Olmo Conesa, M Carmen3
  • Pastor Moreno, Antonio4
  • Santos Mateo, Juan José3
  • Muñoz Esparza, Carmen5
  • Navarro Peñalver, Marina5
  • Castro García, Francisco José6
  • Sabater Molina, María7
  • Gimeno Blanes, Juan Ramón7
  • 1 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; European Reference Networks (Guard-Heart), European Commission, Brussels, Belgium; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain. Electronic address: [email protected] , (Belgium)
  • 2 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; Red de Investigación Cardiovascular (CIBERCV), Instituto de Salud Carlos III, Madrid, Spain. , (Spain)
  • 3 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; European Reference Networks (Guard-Heart), European Commission, Brussels, Belgium; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain. , (Belgium)
  • 4 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain. , (Spain)
  • 5 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; European Reference Networks (Guard-Heart), European Commission, Brussels, Belgium; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain; Red de Investigación Cardiovascular (CIBERCV), Instituto de Salud Carlos III, Madrid, Spain. , (Belgium)
  • 6 European Reference Networks (Guard-Heart), European Commission, Brussels, Belgium; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain; Servicio de Cardiología Pediátrica, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; Facultad de Medicina, Universidad de Murcia, Campus de El Palmar, El Palmar, Murcia, Spain. , (Belgium)
  • 7 Unidad de Cardiopatías Hereditarias, Servicio de Cardiología, Hospital Clínico Universitario Virgen de la Arrixaca, El Palmar, Murcia, Spain; European Reference Networks (Guard-Heart), European Commission, Brussels, Belgium; Instituto Murciano de Investigación Biosanitaria (IMIB), El Palmar, Murcia, Spain; Red de Investigación Cardiovascular (CIBERCV), Instituto de Salud Carlos III, Madrid, Spain; Facultad de Medicina, Universidad de Murcia, Campus de El Palmar, El Palmar, Murcia, Spain. , (Belgium)
Type
Published Article
Journal
Revista espanola de cardiologia (English ed.)
Publication Date
Jun 01, 2021
Volume
74
Issue
6
Pages
526–532
Identifiers
DOI: 10.1016/j.rec.2020.06.014
PMID: 32709565
Source
Medline
Keywords
Language
Spanish
License
Unknown

Abstract

Study of inherited heart diseases (IHD) involves performing diagnostic tests, which are sometimes inconvenient or stressful, in asymptomatic relatives. The aim of this study was to analyze refusal to undergo various diagnostic tests and follow therapeutic recommendations. We assessed 1992 consecutive families with IHD to analyze refusal to undergo family screening. The study included 1539 individuals who were recommended to undergo cardiac magnetic resonance, and 837 who were recommended a drug challenge test. To study treatment refusal, we assessed 395 patients with an indication for an implantable cardioverter-defibrillator (ICD) and 402 patients with an indication for anticoagulation. A total of 28% of families who were recommended to undergo screening for suspected IHD did not attend, but refusal was lower if there was a family history of sudden cardiac death. In all, 23% did not undergo magnetic resonance, and the 2 main reasons were administrative problems (53%) and claustrophobia (18%). Refusal was more common in older people, women, symptomatic persons, individuals with arrhythmias, and relatives. Nearly one fifth (19%) did not take the drug challenge test, due to fear (46%) or administrative issues (25%). Refusal was more frequent in older individuals, asymptomatic persons, those with a history of arrhythmias, relatives, and those with a positive genetic study. Only a minority of patients rejected the treatments (5.1% ICD, 2.5% anticoagulation). The percentage of sudden cardiac death in persons rejecting ICD implantation was high (4.5% per year). One fifth of people attending screening for IHD refused to undergo more sophisticated and stressful tests. This study identified several independent predictors associated with refusal. Only a minority of high-risk patients refused treatments such as ICD implantation and anticoagulation. Copyright © 2020 Sociedad Española de Cardiología. Published by Elsevier España, S.L.U. All rights reserved.

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