title: Quality of Life in Young Adult Patients with a Cardiogenetic Condition Receiving an ICD for Primary Prevention of Sudden Cardiac Death.
abstract: BACKGROUND
  Prophylactic implantable cardioverter defibrillator (ICD) therapy prevents sudden cardiac death (SCD) among young adults with cardiogenetic conditions, but might reduce quality of life (QoL) due to potential device complications, ongoing medical appointments, and lifestyle restrictions. We investigated QoL in the first year after ICD implantation for the primary prevention of SCD and compared QoL scores with population norms.
  
  
  METHODS
  Consecutive patients with cardiogenetic conditions (aged 18-50 years) referred to the Academic Medical Center in Amsterdam to receive ICD therapy for the primary prevention of SCD between 2007 and 2009 were eligible. Patients completed questions about QoL (Short-Form 36 Health Survey; SF-36), depressive symptoms (Center for Epidemiologic Studies Depression scale; CES-D), anxiety (State-Trait Anxiety Inventory; STAI), and the impact of receiving ICD therapy on lifestyle and work, shortly before ICD implantation and after 2 months, 6 months, and 12 months.
  
  
  RESULTS
  Thirty-five of 47 eligible patients participated. QoL was significantly reduced shortly before and 2 months after ICD implantation but improved over time and was comparable with population norms at 6 months and 12 months after ICD implantation. Yet, only about half of the patients believed they had a normal life like everyone else, and 28% had lost or changed their job due to their cardiogenetic condition and ICD therapy.
  
  
  CONCLUSIONS
  Receiving a diagnosis of a cardiogenetic condition and subsequent ICD implantation was accompanied with a temporarily reduced QoL and a significant negative impact on professional life. Clinicians should inform their patients of the possible QoL consequences when deciding about ICD implantation in primary prevention of SCD in cardiogenetic conditions.
authors.affiliation: Department of Clinical and Experimental Cardiology, Heart Centre AMC, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Agnes J
authors.initials: AJ
authors.lastname: Verkerk
authors.affiliation: Department of Clinical Genetics, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Alexa M
authors.initials: AM
authors.lastname: Vermeer
authors.affiliation: Department of Medical Psychology, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Smets
authors.affiliation: Department of Cardiology, Catharina Hospital, Eindhoven, the Netherlands.
authors.forename: Lukas R
authors.initials: LR
authors.lastname: Dekker
authors.affiliation: Department of Clinical and Experimental Cardiology, Heart Centre AMC, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Arthur A
authors.initials: AA
authors.lastname: Wilde
authors.affiliation: Department of Clinical Genetics, University Medical Center Groningen, Groningen, the Netherlands.
authors.forename: Irene M
authors.initials: IM
authors.lastname: Van Langen
authors.affiliation: Department of Clinical Genetics, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Imke
authors.initials: I
authors.lastname: Christiaans
authors.affiliation: Department of Medical Psychology, Academic Medical Center, Amsterdam, the Netherlands.
authors.forename: Pythia T
authors.initials: PT
authors.lastname: Nieuwkerk
mesh_terms: D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000209:etiology* / Q000523:psychology; D016757:Death, Sudden, Cardiac / Q000517:prevention & control*; D017147:Defibrillators, Implantable / Q000009:adverse effects*; D003863:Depression / Q000209:etiology* / Q000523:psychology; D004554:Electric Countershock / Q000009:adverse effects / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D016896:Treatment Outcome; D055815:Young Adult
keywords: cardiogenetic conditions; health-related quality of life; implantable cardioverter defibrillators; quality of life