Highlights
- •Priorities and needs in epilepsy differ between patients and physicians.
- •Physicians prioritize the information on diagnosis and treatment of epilepsy.
- •Patients focus on the search of the cause and the side effects of drugs.
- •Patients' priorities vary only in part with the severity of the disease.
- •Physicians tend to undervalue the communication of specific information.
Abstract
Objective
The objective of this study was to assess the priorities of patients with epilepsy
and their caring physicians with reference to the timing and severity of the disease.
Methods
This is a national survey in which patients with epilepsy followed in 21 Italian epilepsy
centers, and their caring physicians were asked to fill anonymous questionnaires to
collect data on different aspects of the disease and their needs and priorities in
its management. The collected information included demographics, clinical profile
and diagnosis, treatment and outcome of epilepsy. The questions were designed to understand
the expectations of the patients and their caring physicians and verify the degree
of concordance between patient and doctor. The study population was divided in six
prognostic categories: (1) Newly diagnosed epilepsy; (2) Absence of seizures for at
least 2 years; (3) Absence of seizures for at least 1 year or occasional seizures;
(4) Nondrug-resistant recurrent seizures; (5) drug-resistant seizures; (6) surgical
candidate.
Results
Of the 787 patients enrolled, 432 were women and 355 men aged 15 to 88 years (median
41 years). Disease duration ranged from 6 months to 75 years. The sample included
53 patients with newly diagnosed epilepsy, 283 without seizures for at least 2 years,
162 seizure-free for at least 1 year or with occasional seizures, 123 with nondrug-resistant
recurrent seizures, 128 with drug-resistant seizures, and 38 surgical candidates.
Significant differences were found between patients and physicians in terms of priorities
and needs with reference to the management of the disease. While physicians tend to
prioritize the information on the diagnosis and treatment of epilepsy depending on
timing and severity, patients focus on the search of the cause, the side effects of
drugs, and the effects of any new treatment on the control of seizures regardless
of the prognostic category. In addition, physicians tend to undervalue the communication
of specific information, like the risk of sudden unexpected death in epilepsy (SUDEP)
or the existence of lay associations, which might be of special interest for selected
categories of patients.
Significance
Differences between patients with epilepsy and their caring physicians in terms of
needs and priorities and suboptimal communication call for the implementation of programs
aimed at addressing the factors deemed most relevant by patients and caregivers for
the management of the disease.
Keywords
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Article info
Publication history
Published online: July 29, 2020
Accepted:
May 25,
2020
Received:
April 15,
2020
Identification
Copyright
© 2020 Elsevier Inc. All rights reserved.
