title: Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator.
abstract: BACKGROUND
  Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients' preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients' experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients' perspective concerning end-of-life issues are scarce.
  
  
  OBJECTIVE
  The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the 'Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients' Questionnaire' (EOL-ICDQ).
  
  
  METHODS
  The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested.
  
  
  RESULTS
  The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient.
  
  
  CONCLUSIONS
  The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.
authors.affiliation: 1Division of Nursing Sciences, Linköping University, Sweden.
authors.forename: Ingela
authors.initials: I
authors.lastname: Thylén
authors.forename: Marika
authors.initials: M
authors.lastname: Wenemark
authors.forename: Christina
authors.initials: C
authors.lastname: Fluur
authors.forename: Anna
authors.initials: A
authors.lastname: Strömberg
authors.forename: Kärstin
authors.initials: K
authors.lastname: Bolse
authors.forename: Kristofer
authors.initials: K
authors.lastname: Årestedt
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001145:Arrhythmias, Cardiac / Q000451:nursing / Q000523:psychology / Q000628:therapy; D001293:Attitude to Death; D064646:Cardiovascular Nursing / Q000379:methods*; D017147:Defibrillators, Implantable / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011594:Psychometrics / Q000379:methods; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000523:psychology*
keywords: Cognitive interviewing; end-of-life questionnaire; implantable cardioverter defibrillator; proactive communication; psychometric testing; respondent satisfaction