title: Decision-Making Experiences of Patients with Implantable Cardioverter Defibrillators.
abstract: BACKGROUND
  When patients are not adequately engaged in decision making, they may be at risk of decision regret. Our objective was to explore patients' perceptions of their decision-making experiences related to implantable cardioverter defibrillators (ICDs).
  
  
  METHODS
  Cross-sectional, mailed survey of 412 patients who received an ICD without cardiac resynchronization therapy for any indication between 2006 and 2009. Patients were asked about decision participation and decision regret.
  
  
  RESULTS
  A total of 295 patients with ICDs responded (72% response rate). Overall, 79% reported that they were as involved in the decision as they wanted. However, 28% reported that they were not told of the option of not getting an ICD and 37% did not remember being asked if they wanted an ICD. In total, 19% reported not wanting their ICD at the time of implantation. Those who did not want the ICD were younger (<65 years; 74% vs 43%, P < 0.001), had higher decision regret (31/100 vs 11/100, P < 0.001), and reported less participation in decision making (the doctor "totally" made the decision, 9% vs 3%; P < 0.001).
  
  
  CONCLUSIONS
  A considerable number of ICD recipients recalled not wanting their ICD at the time of implantation. While these findings may be prone to recall bias, they likely identify opportunities to improve ICD decision making.
authors: Division of Geriatric Medicine, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland. ariel@jhmi.edu.
authors: Ariel R
authors: AR
authors: Green
authors: Division of Geriatrics, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
authors: Amy
authors: A
authors: Jenkins
authors: Division of Cardiology, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.|Colorado Cardiovascular Outcomes Research Consortium, Denver, Colorado.
authors: Frederick A
authors: FA
authors: Masoudi
authors: Colorado Cardiovascular Outcomes Research Consortium, Denver, Colorado.|Institute for Health Research, Kaiser Permanente Colorado, Denver, Colorado.
authors: David J
authors: DJ
authors: Magid
authors: Division of Geriatrics, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
authors: Jean S
authors: JS
authors: Kutner
authors: Division of Geriatric Medicine, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland.|Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland.|Department of Community and Public Health, Johns Hopkins School of Nursing, Baltimore, Maryland.
authors: Bruce
authors: B
authors: Leff
authors: Division of Geriatrics, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.|Colorado Cardiovascular Outcomes Research Consortium, Denver, Colorado.
authors: Daniel D
authors: DD
authors: Matlock
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003430:Cross-Sectional Studies; D003657:Decision Making; D017147:Defibrillators, Implantable; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D011795:Surveys and Questionnaires
keywords: ICDs; decision making; decision regret; shared decision making