Knowledge, attitudes & perceptions of ICD deactivation & EOL issues
Research type
Research Study
Full title
Knowledge, attitudes and perceptions of Implantable Cardioverter Defibrillator deactivation and end-of-life issues among Implantable Cardioverter Defibrillator recipients.
IRAS ID
194847
Contact name
Stephen Liggett
Contact email
Sponsor organisation
Queens University, Belfast
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
This study is part of an International study, the purpose of which is to identify the factors associated with patient’s attitudes towards generator replacement at end-of-service and Implantable Cardioverter Defibrillator (ICD) deactivation at the end-of-life. Evidence has found many patients with an ICD are not aware of their options concerning the device, with professionals delaying end-of-life discussions and patient-centred decision-making until there was an urgent need to address them. As a consequence patient and family members are limited in their choices, often resulting in unnecessary suffering due to shocks being delivered from an active ICD during the dying process. This can compromise quality of life for the patient and their family at the end-of-life.
Eligible participants are patients aged 18 years and over, with an implantable cardioverter defibrillator (ICD) or cardiac resynchronisation therapy and ICD (CRT-D) for at least 12 months, and an ability to speak and write in English.
The site of this study will be the Belfast Health and Social Care Trust cardiology outpatients departments. This trust is the main implantation centre within Northern Ireland, with a clinical audit report (2012) showing NI was the highest pro-rata implanter of ICDs (120 per million population) and third highest pro-rata for CRT-Ds (60 per million population) within the UK. The study will complete in 2018, with the aim being to recruit 100 patients with an ICD. Each patient will provide written informed consent before being asked to complete eight validated questionnaires. These questionnaires will ask about attitudes, experiences and knowledge of their ICD, health history, cognitive function, emotions and concerns about the ICD, quality of life, ability to read and apply health-related information and level of social support. The maximum length of time to complete the study will be 2 hours.REC name
HSC REC A
REC reference
17/NI/0070
Date of REC Opinion
25 May 2017
REC opinion
Further Information Favourable Opinion