Living with an implantable cardioverter defibrillator: patients' preferences and needs for information provision and care options

Susanne S Pedersen, Charlotte Knudsen, Karen Dilling, Niels C F Sandgaard, Jens Brock Johansen

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Abstract

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.

Original languageEnglish
JournalEuropace
Volume19
Issue number6
Pages (from-to)983-990
ISSN1099-5129
DOIs
Publication statusPublished - 2017

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Implantable Defibrillators
Patient Preference
Patient Care Management
Delivery of Health Care
Patient Transfer
Cardiac Resynchronization Therapy
Exercise Tolerance
Exercise Test
Survivors
Equipment and Supplies

Cite this

@article{c2b3ab91e0ae43e5b4fc7086aa508c16,
title = "Living with an implantable cardioverter defibrillator: patients' preferences and needs for information provision and care options",
abstract = "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.",
author = "Pedersen, {Susanne S} and Charlotte Knudsen and Karen Dilling and Sandgaard, {Niels C F} and Johansen, {Jens Brock}",
note = "Published on behalf of the European Society of Cardiology. All rights reserved. {\circledC} The Author 2016. For permissions please email: journals.permissions@oup.com.",
year = "2017",
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language = "English",
volume = "19",
pages = "983--990",
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Living with an implantable cardioverter defibrillator : patients' preferences and needs for information provision and care options. / Pedersen, Susanne S; Knudsen, Charlotte; Dilling, Karen; Sandgaard, Niels C F; Johansen, Jens Brock.

In: Europace, Vol. 19, No. 6, 2017, p. 983-990.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

T1 - Living with an implantable cardioverter defibrillator

T2 - patients' preferences and needs for information provision and care options

AU - Pedersen, Susanne S

AU - Knudsen, Charlotte

AU - Dilling, Karen

AU - Sandgaard, Niels C F

AU - Johansen, Jens Brock

N1 - Published on behalf of the European Society of Cardiology. All rights reserved. © The Author 2016. For permissions please email: journals.permissions@oup.com.

PY - 2017

Y1 - 2017

N2 - 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.

AB - 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.

U2 - 10.1093/europace/euw109

DO - 10.1093/europace/euw109

M3 - Journal article

C2 - 27267553

VL - 19

SP - 983

EP - 990

JO - Europace

JF - Europace

SN - 1099-5129

IS - 6

ER -