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.

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.

• Authors: Ingela Thylén, Marika Wenemark, Christina Fluur, Anna Strömberg, Kärstin Bolse, Kristofer Årestedt
• Journal: European journal of cardiovascular nursing (Eur J Cardiovasc Nurs) Vol. 13 Issue 2 Pg. 142-51 (Apr 2014) ISSN: 1873-1953 [Electronic] England
• PMID: 24298191 (Publication Type: Journal Article, Research Support, Non-U.S. Gov't)

Topics

• Adult
• Aged
• Aged, 80 and over
• Arrhythmias, Cardiac (nursing, psychology, therapy)
• Attitude to Death
• Cardiovascular Nursing (methods)
• Defibrillators, Implantable (psychology)
• Female
• Health Knowledge, Attitudes, Practice
• Humans
• Male
• Middle Aged
• Patient Satisfaction
• Psychometrics (methods)
• Surveys and Questionnaires
• Terminal Care (methods, psychology)