Incorporating the patient perspective: a critical review of clinical practice guidelines for implantable cardioverter defibrillator therapy

  • Kerry E. Joyce
  • Stephen Lord
  • Daniel D. Matlock
  • Janet M. McComb
  • Richard Thomson



Implantable cardioverter defibrillators (ICDs) are recommended for patients with heart failure and/or ventricular arrhythmias at risk of sudden cardiac death. Guidelines for ICD implantation are derived from robust clinical data. However, critical factors which might influence treatment decisions include patient preferences. We set out to determine how clinical practice guidelines (CPGs) incorporate the patient perspective into supporting decision making about ICDs.


CPGs on ICD implantation were purposively selected from national and professional bodies in Europe, North America and Australasia. CPGs were then appraised according to three key domains of shared decision making: (a) informing patients about the risks, benefits and consequences known to be important to patients; (b) personalising risks and benefits and (c) involvement of patient (plus family/significant others if desired) in decision making.


Appraisal of six current CPGs found major deficiencies or inconsistencies in guidance. CPGs tended to focus on evidence of device effectiveness, with sparse consideration of other outcomes important to patients such as impacts on quality of life and psychosocial well-being. Little reference was made to involvement of the patient in decision making.


This suggests that embedding shared decision in CPGs will improve the patient-centeredness of ICD treatment by enabling patients to make informed, value-based decisions. Specific recommendations for CPG development include the need for signposting to preference sensitive decision points as well as inclusion of a broader range of outcomes which are known to be important to patients when deciding whether or not to have a device fitted.


Shared decision making Implantable cardioverter defibrillators Clinical practice guidelines Patient perspective Psychosocial outcomes 


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Copyright information

© Springer Science+Business Media New York 2012

Authors and Affiliations

  • Kerry E. Joyce
    • 1
  • Stephen Lord
    • 2
  • Daniel D. Matlock
    • 3
  • Janet M. McComb
    • 2
  • Richard Thomson
    • 1
  1. 1.Institute of Health & SocietyNewcastle UniversityNewcastle upon TyneUK
  2. 2.Department of CardiologyFreeman HospitalNewcastle upon TyneUK
  3. 3.Academic Office 1University of Colorado School of MedicineAuroraUSA

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