The management of epilepsy in clinical practice: Do the timing and severity of the disease influence the priorities of patients and the caring physicians? Data from the EPINEEDS study.
Epilepsy Behav
; 114(Pt A): 107201, 2021 01.
Article
en En
| MEDLINE
| ID: mdl-32739237
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 2â¯years; (3) Absence of seizures for at least 1â¯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 88â¯years (median 41â¯years). Disease duration ranged from 6â¯months to 75â¯years. The sample included 53 patients with newly diagnosed epilepsy, 283 without seizures for at least 2â¯years, 162 seizure-free for at least 1â¯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.Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Médicos
/
Epilepsia
Tipo de estudio:
Prognostic_studies
Límite:
Adolescent
/
Adult
/
Aged
/
Aged80
/
Female
/
Humans
/
Male
/
Middle aged
País/Región como asunto:
Europa
Idioma:
En
Revista:
Epilepsy Behav
Asunto de la revista:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
Año:
2021
Tipo del documento:
Article
País de afiliación:
Italia