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

Thylén, Ingela; Wenemark, Marika; Fluur, Christina; Strömberg, Anna; Bolse, Kärstin; Årestedt, Kristofer

doi:10.1177/1474515113515563

Cited by 20 publications

(25 citation statements)

References 23 publications

(27 reference statements)

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“…The EOL-ICD Questionnaire has demonstrated sound psychometric properties. 39 In the current study, the knowledge subscale Cronbach's alpha was 0.78.…”

Section: Icd Knowledge Icd Knowledge Was Assessed Using the End-of-lmentioning

confidence: 51%

“…Questionnaire. 39 The EOL-ICD is a self-rated questionnaire, consisting of three subscales that measure experiences (10 items), attitudes (18 items), and knowledge (11 items) of EOL or related issues in ICD patients. The 11 items in the knowledge subscale measure ethical aspects of treatment (3 items), how the ICD works (2 items), and the significance of ICD deactivation (6 items).…”

Section: Icd Knowledge Icd Knowledge Was Assessed Using the End-of-lmentioning

confidence: 99%

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Perceived control and quality of life among recipients of implantable cardioverter defibrillator

Hammash

McEvedy

Wright

et al. 2019

Australian Critical Care

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Background: Perceived control is strongly associated with health-related quality of life (HRQOL) among patients with chronic conditions, and it is possible to increase perceived control with appropriate intervention. Little is known about the relationship between perceived control and HRQOL in implantable cardioverter defibrillator (ICD) recipients. Objectives: To determine the relationship of perceived control with quality of life (QOL) in ICD recipients and to determine predictors of perceived control in this population. Methods: A total of 263 ICD recipients (63% male, age 61 ± 14 years) completed the Control Attitude Scale-Revised to measure perceived control and completed self-reported measures on potential correlates of perceived control (i.e., depressive symptoms, anxiety, social support, and ICD concerns). The EuroQol-5D was used to measure HRQOL. Regression analysis was used to determine predictors of perceived control and its relationship to HRQOL, controlling for covariates. Results: Lower perceived control (β = 0.30, p <.01), and higher levels of depression (β =-0.30, p <.01) and anxiety (β =-0.18, p < .05) predicted lower levels of HRQOL. Higher anxiety (β =-0.17, p <.05), higher depression (β =-0.23, p < .05), lower social support (β = 0.26, p < .01), and higher ICD-related concerns (β =-0.16, p <.05) independently predicted lower perceived control. Conclusions: Interventions targeting patients' ICD concerns and psychosocial factors before, and continuing after, ICD insertion are needed to improve ICD recipients' perceived control and, in turn, their HRQOL in ICD recipients.

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“…The EOL-ICD Questionnaire has demonstrated sound psychometric properties. 39 In the current study, the knowledge subscale Cronbach's alpha was 0.78.…”

Section: Icd Knowledge Icd Knowledge Was Assessed Using the End-of-lmentioning

confidence: 51%

Section: Icd Knowledge Icd Knowledge Was Assessed Using the End-of-lmentioning

confidence: 99%

Perceived control and quality of life among recipients of implantable cardioverter defibrillator

Hammash

McEvedy

Wright

et al. 2019

Australian Critical Care

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“…Instead of avoiding the subject of end of life, Thylen et al. have developed a questionnaire (EOL‐ICDQ) to help explore patients’ experiences, attitudes, and knowledge regarding end‐of‐life issues …”

Section: Discussionmentioning

confidence: 99%

“…Instead of avoiding the subject of end of life, Thylen et al have developed a questionnaire (EOL-ICDQ) to help explore patients' experiences, attitudes, and knowledge regarding end-of-life issues. 40 Pedersen, who examined patients' knowledge and wishes for information, found that 68% (n = 294) were aware of the possibility of getting their ICD deactivated and 95% believed it is important to inform patients about this option. 41 The medium age for this patient group was 58.65 ± 13.50.…”

Section: Comprehensive Understandingmentioning

confidence: 99%

Refusing Implantable Cardioverter Defibrillator (ICD) Replacement in Elderly Persons-The Same as Giving Up Life: A Qualitative Study

Svanholm

Nielsen

Mortensen

et al. 2015

Pacing and Clinical Electrophysiology

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The elderly ICD recipients tended not to be aware of the option of declining replacement of their ICD. They tended to expect to have their ICD replaced and not to be involved actively in decision making concerning this. Healthcare professionals have an obligation to discuss options and ensure that every patient understands these. More research is needed to change practices and create more realistic, person-centered, ethically acceptable, and constructive healthcare for elderly persons with an ICD.

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“…An alternative strategy could be tailored information provided sensitively by a professional known to the patient and family at opportune times through-out device implantation. A questionnaire has been successfully implemented as such an assessment and educational tool (34). There is need for more research on the informational needs and its optimal format for patients and their family.…”

Section: Tailored Information or Event-driven Information?mentioning

confidence: 99%

Implantable cardioverter defibrillator (ICD) functionality: patient and family information for advanced decision-making

Hill

McIlfatrick

Taylor

et al. 2019

BMJ Support Palliat Care

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As the number of implantable cardioverter defibrillators (ICDs) implanted continues to rise, there is a growing challenge to ensure patients and family members are adequately equipped for involvement in future end-of-life decisions concerning their device.ObjectiveTo explore patients’, family members’ and professionals’ attitudes and understanding towards discussing ICD deactivation.MethodsCase study approach using qualitative interviews and framework analysis. A total of 29 qualitative interviews were undertaken, involving patients with a device, family members and healthcare professionals. Interviews were audio-recorded, transcribed verbatim and analysed using framework analysis. Data were triangulated with information obtained from the patients’ medical records (n=10).ResultsThree main themes: (1) Professionals were reluctant to engage in conversations concerning deactivation, particularly prior to implantation, believing this was in the patient’s best interest. (2) Patients and family members had limited understanding of the implanted device and its functions. It was frequently perceived as ‘life-saving’ with any negativity of the shock experience seen as acceptable. (3) All patients wanted the opportunity to discuss deactivation when death was imminent, but were indecisive whether family members should be involved. Similarly, some patients felt the decision to deactivate rested solely with the medical profession while others felt it should be a joint decision between patient, family and clinical team.ConclusionsPatients and family members require improved communication and information concerning their future treatment plan and functionality of an ICD. A proactive approach to discuss deactivation would enable shared clinical decision-making in the advanced stages of illness.

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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

Abstract: Background Due to extended indications and resynchronization therapy, many

Cited by 20 publications

References 23 publications

Perceived control and quality of life among recipients of implantable cardioverter defibrillator

Perceived control and quality of life among recipients of implantable cardioverter defibrillator

Refusing Implantable Cardioverter Defibrillator (ICD) Replacement in Elderly Persons-The Same as Giving Up Life: A Qualitative Study

Implantable cardioverter defibrillator (ICD) functionality: patient and family information for advanced decision-making

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