Major gaps in the information provided to patients before implantation of cardioverter defibrillators: a prospective patient European evaluation
Open accessAbstract
AIMS: Information provided to patients prior to implantable cardioverter-defibrillator (ICD) insertion and their participation in the decision-making process are crucial for understanding ICD function and accepting this lifelong therapy. The aim of this study is to evaluate the extent to which different aspects related to ICD and quality of life were transmitted to patients prior to ICD implantation. METHODS AND RESULTS: Prospective, multicenter European study with an online questionnaire initiated by the European Heart Rhythm Association. The questionnaire was filled-in directly and personally by the ICD patients who were invited to participate. A total of 1809 patients (majority in their 40s-70s, with 624 women, 34.5%) from 10 European countries participated in the study. The median time from first ICD implantation was 5 years (interquartile range 2-10). Overall, 1155 patients (71.5%) felt optimally informed at the time of device implantation, however many respondents received no information about ICD-related complications (n = 801, 49.6%), driving restrictions (n = 718, 44.5%), and possibility of end-of-life ICD deactivation (n = 408, 25.4%). Of note, women were less frequently involved in the decision-making process than men (47.3% vs. 55.9%, P = 0.003) and reported to be less often optimally informed before ICD implantation than men (61.2% vs. 76.8%, P < 0.001). More women mentioned the desire to have learned more about ICD therapy and the benefit/risk balance (45.4% vs. 33.7% of men; P < 0.001). CONCLUSIONS: This patient-based evaluation provides alarming findings on the lack of information provided to patients prior ICD implantation, particularly for women.
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Studies on ICD patients' needs and preferences point towards the need for increased focus on psychological support, regular feedback, and continuity in care.
“Studies on ICD patients’ needs and preferences also point towards the need for increased focus on psychological support, regular feedback, and continuity in care.12,13”
From Efficacy of a web-based healthcare innovation to advance the quality of life and care of patients with an implantable cardioverter defibrillator (ACQUIRE-ICD): A randomized controlled trial (2023) · cites this paper as [13]
The Results report that fewer than a third of patients were offered psychological support after implantation. The Discussion calls for better physician–patient communication and discusses continued communication about ICD deactivation, but it does not establish a need for regular feedback or continuity in care more broadly. Page numbers were not available in our copy. (LLM, conf=0.84)
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- Authors
- Januszkiewicz, Ł., Barra, S., Marijon, E., Providencia, R., de Asmundis, C., Chun, J. K. R., Farkowski, M. M., Conte, G., & Boveda, S.
- Affiliations
- Medical University of Warsaw (PL)
- Cardiology Department, Hospital da Luz Arrabida , V. N. Gaia , Portugal
- University of Paris , Paris , France
- St Bartholomew's Hospital (GB)
- Heart Rhythm Management Centre, Universitair Ziekenhuis Brussel—Vrije Universiteit Brussel , Laarbeeklaan 101, 1090, Brussels , Belgium
- CCB, Cardiology, Med. Klinik III, Markuskrankenhaus , Frankfurt , Germany
- Institute of Cardiology (PL)
- Istituto Cardiocentro Ticino (CH)
- Heart Rhythm Department, Clinique Pasteur , 31076 Toulouse , France
- ORCID
- Venue
- EP Europace
- Publisher
- Oxford University Press (OUP)
- Published
- 2023-01-24
- Volume
- 25
- Issue
- 3
- Pages
- 1144-1151
- ISSN
- 1099-5129 (ISSN-L)
- 1532-2092
- PMC
- PMC10062348
- OpenAlex
- W4317866598
- Cited by
- 15
- References
- 23
- Citations by year
- 2026: 3 · 2024: 7 · 2023: 5
- FWCI
- 2.95
- Type
- journal article
- Language
- en
- Status
- Retracted
- Open access
- hybrid
- doi.org
- Licence
- Locations
- EP Europace (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion, cc-by-nc)
- VUBIR (Vrije Universiteit Brussel) (submittedVersion)
- HAL (submittedVersion, cc-by-nc)
- Topics
- Health Sciences › Medicine › Cardiology and Cardiovascular Medicine › Cardiac pacing and defibrillation studies
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- implantable cardioverter-defibrillator, patient information, informed consent, shared decision-making, sex differences, quality of life, ICD complications, driving restrictions, ICD deactivation, benefit-risk balance, patient satisfaction
- MeSH terms
- Electric Countershock, Europe, Female, Humans, Male, Prospective Studies, Quality of Life, Death, Sudden, Cardiac, Defibrillators, Implantable
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