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


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.


CONCLUSIONS
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.
Department of Psychology, University of Southern Denmark, Campusvej 55, DK-5230 Odense M, Denmark.|Department of Cardiology, Odense University Hospital, Odense, Denmark.|Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands.
Susanne S
SS
Pedersen
Department of Cardiology, Odense University Hospital, Odense, Denmark.
Charlotte
C
Knudsen
Department of Cardiology, Odense University Hospital, Odense, Denmark.
Karen
K
Dilling
Department of Cardiology, Odense University Hospital, Odense, Denmark.
Niels C F
NCF
Sandgaard
Department of Cardiology, Odense University Hospital, Odense, Denmark.
Jens Brock
JB
Johansen
D000223:Adaptation, Psychological; D000368:Aged; D001145:Arrhythmias, Cardiac / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D001291:Attitude of Health Personnel; D003142:Communication; D017281:Cost of Illness; D017147:Defibrillators, Implantable; D003695:Delivery of Health Care / Q000379:methods*; D003718:Denmark; D004554:Electric Countershock / Q000295:instrumentation*; D005080:Exercise Test; D017079:Exercise Tolerance; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000379:methods*; D057240:Patient Preference; D011369:Professional-Patient Relations; D012944:Social Support; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
Implantable cardioverter defibrillator; Information provision; Patient preferences; Satisfaction with treatment