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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
Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Cardiology in Linköping.ORCID iD: 0000-0002-7097-392X
Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences.ORCID iD: 0000-0002-6281-7783
Östergötlands Läns Landsting, Heart and Medicine Center, Department of Cardiology in Linköping.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Cardiology in Linköping.ORCID iD: 0000-0002-4259-3671
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2014 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 13, no 2, 142-151 p.Article in journal (Refereed) Published
Abstract [en]

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.                    

Aim: 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.

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Place, publisher, year, edition, pages
Sage Publications, 2014. Vol. 13, no 2, 142-151 p.
Keyword [en]
Cognitive interviewing, end-of-life questionnaire, implantable cardioverter defibrillator, proactive communication, psychometric testing, respondent satisfaction
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-105740DOI: 10.1177/1474515113515563ISI: 000332104200007PubMedID: 24298191OAI: oai:DiVA.org:liu-105740DiVA: diva2:710358
Available from: 2014-04-07 Created: 2014-04-04 Last updated: 2017-12-05Bibliographically approved

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Thylén, IngelaWenemark, MarikaStrömberg, AnnaÅrestedt, Kristofer
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