title: Incorporating the patient perspective: a critical review of clinical practice guidelines for implantable cardioverter defibrillator therapy.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Institute of Health & Society, Newcastle University, Baddiley Clark Building, Richardson Road, Newcastle upon Tyne, NE2 4AX, UK. kerry.joyce@ncl.ac.uk
authors.forename: Kerry E
authors.initials: KE
authors.lastname: Joyce
authors.forename: Stephen
authors.initials: S
authors.lastname: Lord
authors.forename: Daniel D
authors.initials: DD
authors.lastname: Matlock
authors.forename: Janet M
authors.initials: JM
authors.lastname: McComb
authors.forename: Richard
authors.initials: R
authors.lastname: Thomson
mesh_terms: D001145:Arrhythmias, Cardiac / Q000628:therapy*; D016757:Death, Sudden, Cardiac / Q000517:prevention & control; D003657:Decision Making; D017147:Defibrillators, Implantable; D006333:Heart Failure / Q000628:therapy*; D006801:Humans; D018802:Patient-Centered Care; D017410:Practice Guidelines as Topic; D011788:Quality of Life; D018570:Risk Assessment