Living with an implantable cardioverter defibrillator: patients' preferences and needs for information provision and care options
Open accessAbstract
AIMS: The clinical management and care of patients with an implantable cardioverter defibrillator (ICD) has shifted from face-to-face in-clinic visits to remote monitoring. Reduced interactions between patients and healthcare professionals may impede patients' transition to adapting post-implant. We examined patients' needs and preferences for information provision and care options and overall satisfaction with treatment. METHODS AND RESULTS: Patients implanted with a first-time ICD or defibrillator with cardiac resynchronization therapy (n = 389) within the last 2 years at Odense University Hospital were asked to complete a purpose-designed and standardized set of questionnaires. The level of satisfaction with information provision was high; only 13.1% were dissatisfied. Psychological support for patients (39.9%), their relatives (43.1%), and deactivation of the ICD towards end of life (47.8%) were among the top five topics that patients reported to have received no information about. The top five care options that patients had missed were talking to the same healthcare professional (75.2%), receiving ongoing feedback via remote monitoring (61.1%), having a personal conversation with a staff member 2-3 weeks post-implant (59.6%), having an exercise tolerance test (52.5%), and staff asking how patients felt while hospitalized (50.4%). Patients with a secondary prevention indication and cardiac arrest survivors had specific needs, including a wish for a psychological consult post-discharge. CONCLUSION: Despite a high satisfaction level with information provision, particular topics are not broached with patients (e.g. device activation) and patients have unmet needs that are not met in current clinical practice.
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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”
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Cites
The PHQ-9: Validity of a brief depression severity measure
Kroenke, K., Spitzer, R. L., & Williams, J. B. W. (2001) · Journal of General Internal Medicine · doi:10.1046/j.1525-1497.2001.016009606.x · Cited by 44,910 · see citing works
Lampert, R., Hayes, D. L., Annas, G. J., Farley, M. A., Goldstein, N. E., Hamilton, R. M., Kay, G. N., Kramer, D. B., Mueller, P. S., Padeletti, L., et al. (2010) · Heart Rhythm · doi:10.1016/j.hrthm.2010.04.033 · Cited by 434 · see citing works
Lane, D. A., Aguinaga, L., Blomström-Lundqvist, C., Boriani, G., Dan, G.-A., Hills, M. T., Hylek, E. M., LaHaye, S. A., Lip, G. Y. H., Lobban, T., et al. (2015) · Europace · doi:10.1093/europace/euv233 · Cited by 142 · see citing works
Remote monitoring of implantable devices: should we continue to ignore it?
Bertini, M., Marcantoni, L., Toselli, T., & Ferrari, R. (2016) · International Journal of Cardiology · doi:10.1016/j.ijcard.2015.09.033 · Cited by 28 · see citing works
Flagged first, then by citations
Research works printed but not linked: 16
- Betts TR, Sadarmin PP, Tomlinson DR, Rajappan K, Wong KC, de Bono JP, et al. Absolute risk reduction in total mortality with implantable cardioverter defibrillators: analysis of primary and secondary prevention trial data to aid risk/benefit analysis. Europace 2013; 15: 813-819.
- Camm J, Nisam S. Implantable cardioverter-defibrillator utilization. Europace 2011; 13: 448.
- Landolina M, Perego GB, Lunati M, Curnis A, Guenzati G, Vicentini A, et al. Remote monitoring reduces healthcare use and improves quality of care in heart failure patients with implantable defibrillators: the evolution of management strategies of heart failure patients with implantable defibrillators (EVOLVO) study. Circulation 2012; 125: 2985- 2992.
- Hoogwegt MT, Kupper N, Theuns DA, Zijlstra WP, Jordaens L, Pedersen SS. Undertreatment of anxiety and depression in patients with an implantable cardioverter- defibrillator: impact on health status. Health Psychol 2012; 31: 745-753.
- Dunbar SB, Dougherty CM, Sears SF, Carroll DL, Goldstein NE, Mark DB, et al. Educational and psychological interventions to improve outcomes for recipients of implantable cardioverter defibrillators and their families: a scientific statement from the American Heart Association. Circulation 2012; 126: 2146-2172.
- Pedersen SS, van Domburg RT, Theuns DAMJ, Jordaens L, Erdman RAM. Concerns about the implantable cardioverter defibrillator: a determinant of anxiety and depressive symptoms independent of experienced shocks. Am Heart J 2005; 149: 664-669.
- Pedersen SS, Brouwers C, Versteeg H. Psychological vulnerability, ventricular tachyarrhythmias and mortality in implantable cardioverter defibrillator patients: is there a link? Expert Rev Med Devices 2012; 9: 377-388.
- Denollet J. DS14: standard assessment of negative affectivity, social inhibition, and Type D personality. Psychosom Med 2005; 67: 89-97.
- Emons WH, Meijer RR, Denollet J. Negative affectivity and social inhibition in cardiovascular disease: evaluating type-D personality and its assessment using item response theory. J Psychosom Res 2007; 63: 27-39.
- Hoogwegt MT, Widdershoven JW, Theuns DA, Pedersen SS. Information provision, satisfaction and emotional distress in patients with an implantable cardioverter- defibrillator. Int J Cardiol 2014; 177: 586-588.
- Padeletti L, Arnar DO, Boncinelli L, Brachman J, Camm JA, Daubert JC, et al. EHRA Expert Consensus Statement on the management of cardiovascular implantable electronic devices in patients nearing end of life or requesting withdrawal of therapy. Europace 2010; 12: 1480-1489.
- Ricci RP, Morichelli L, Quarta L, Sassi A, Porfili A, Laudadio MT, et al. Long-term patient acceptance of and satisfaction with implanted device remote monitoring. Europace 2010; 12: 674-679.
- Simmers TA. Remote care: bidding our ICD patients a fond farewell? Neth Heart J 2012; 20: 71-76.
- Tagney J, James JE, Albarran JW. Exploring the patient's experiences of learning to live with an implantable cardioverter defibrillator (ICD) from one UK centre: a qualitative study. European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology 2003; 2: 195-203.
- Goossens PH, Moulaert VR. Cognitive impairments after cardiac arrest: implications for clinical daily practice. Resuscitation 2014; 85: A3-4.
- Ketilsdottir A, Albertsdottir HR, Akadottir SH, Gunnarsdottir TJ, Jonsdottir H. The experience of sudden cardiac arrest: becoming reawakened to life. Eur J Cardiovasc Nurs 2014; 13: 429-435. Cardiac rehabilitation 44.8% (30) 50.2% (152) .425 48.5% (63) 48.9% (111) .937 51.7% (60) 47.5% (115) .456 Ongoing feedback via remote monitoring system 64.2% (43) 60.4% (183) .565 58.0% (76) 63.3% (143) .325 60.3% (70) 62.0% (150) . 766 Opportunity to meet other ICD patients 33.3% (23) 24.4% (75) .128 25.0% (33) 26.4% (61) .768 24.8% (29) 26.7% (66) .695 Opportunity to attend ICD workshop with family 44.9% (31) 35.5% (108) .145 30.0% (39) 41.3% (95) .033 41.9% (49) 34.8% (85) .195 Psychological consult while hospitalized 31.7%(20) 24.0% (69) .198 19.0% (23) 28.6% (63) .050 31.3% (35) 22.2% (51) .069 Psychological consult post discharge for me 43.1% (28) 30.3% (88) .048 21.3% (26) 38.5% (85) .001 42.3% (47) 27.5% (64) .006 Psychological consult post discharge for my family 33.3% (21) 30.9% (89) .706 21.3% (26) 37.3% (81) .002 45.5% (50) 24.8% (57) <.0001 Receiving ICD-related information several times rather than once 56.3% (36) 46.4% (135) .153 33.6% (41) 55.7% (123) <.0001 59.5% (66) 42.1% (98) .003
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Pedersen, S. S., Skovbakke, S. J., Wiil, U. K., Schmidt, T., dePont Christensen, R., Brandt, C. J., Sørensen, J., Vinther, M., Larroudé, C. E., Melchior, T. M., et al. (2018) · BMC Cardiovascular Disorders · doi:10.1186/s12872-018-0872-7 · Cited by 18 · see citing works
Self-citationJanuszkiewicz, Ł., Barra, S., Marijon, E., Providencia, R., de Asmundis, C., Chun, J. K. R., Farkowski, M. M., Conte, G., & Boveda, S. (2023) · EP Europace · doi:10.1093/europace/euac275 · Cited by 15 · see citing works
RetractedSkov, O., Johansen, J. B., Nielsen, J. C., Larroudé, C. E., Riahi, S., Melchior, T. M., Vinther, M., Skovbakke, S. J., Rottmann, N., Wiil, U. K., et al. (2023) · Europace · doi:10.1093/europace/euad253 · Cited by 10 · see citing works
“12,13 This calls for a comprehensive care solution for ICD patients with a stepped education and care approach containing psychoe-ducation for all and therapy for some, suggested as a promising avenue to pursue.”
BackgroundSelf-citation
- Authors
- Pedersen, S. S., Knudsen, C., Dilling, K., Sandgaard, N. C. F., & Johansen, J. B.
- Affiliations
- University of Southern Denmark (DK)
- Odense University Hospital (DK)
- Corresponding author
- Pedersen, Susanne S.
- Venue
- Europace
- Publisher
- Oxford University Press (OUP)
- Published
- 2016-06-05
- Volume
- 19
- Issue
- 6
- Pages
- euw109
- ISSN
- 1099-5129 (ISSN-L)
- 1532-2092
- OpenAlex
- W2415099262
- Cited by
- 43
- References
- 4
- Citations by year
- 2025: 1 · 2024: 3 · 2023: 7 · 2022: 5 · 2021: 8 · 2020: 3 · 2019: 4 · 2018: 7 · 2017: 5
- FWCI
- 4.41
- Type
- journal article
- Language
- en
- Open access
- Licence
- other-oa
- Locations
- EP Europace (publishedVersion)
- PubMed (publishedVersion)
- University of Southern Denmark Research Portal (University of Southern Denmark) (submittedVersion, other-oa)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
- 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 › Medicine › Cardiology and Cardiovascular Medicine › Cardiac Health and Mental Health
- Keywords
- implantable cardioverter-defibrillator, patient preferences, patient satisfaction, information provision, remote monitoring, cardiac resynchronization therapy, psychological support, ICD deactivation, end-of-life care, patient education, cardiac arrest survivors, secondary prevention, exercise tolerance test
- MeSH terms
- Adaptation, Psychological, Aged, Arrhythmias, Cardiac, Attitude of Health Personnel, Communication, Delivery of Health Care, Denmark, Electric Countershock, Exercise Test, Female, Health Services Needs and Demand, Humans, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Patient Education as Topic, Professional-Patient Relations, Surveys and Questionnaires, Social Support, Treatment Outcome, Exercise Tolerance, Defibrillators, Implantable, Cost of Illness, Needs Assessment, Patient Preference
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