- •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.
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.
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.
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.
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.
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- The impact of seizures on epilepsy outcomes: a national, community-based survey.Epilepsia. 2017; 58: 764-771
- Quality of life issues and occupational performance of persons with epilepsy.Arq Neuropsiquiatr. 2012; 70: 140-144
- The perceived burden of epilepsy: impact on the quality of life of children and adolescents and their families.Seizure. 2015; 24: 93-101
- Tolerability of antiseizure medications: implications for health outcomes.Neurology. 2004; 63 (Review): S9-S1215557551
- Adverse antiepileptic drug effects in new-onset seizures: a case-control study.Neurology. 2011; 76: 273-279
- Should antiepileptic drugs be withdrawn in seizure-free patients?.CNS Drugs. 2004; 18: 1-12
- Consequences of antiepileptic drug withdrawal: a randomized, double-blind study (Akersus study).Epilepsia. 2008; 49: 455-463
- The management of epilepsy in children and adults.Med J Aust. 2018; 208: 226-233
- The management of epilepsy in clinical practice: do the needs manifested by the patients correspond to the priorities of the caring physicians? Findings from the EPINEEDS Study.Epilepsy Behav. 2020; 102: 106641
- ILAE official report: a practical clinical definition of epilepsy.Epilepsia. 2014; 55: 475-482
- Determinants of health-related quality of life in pharmacoresistant epilepsy: results from a large multicenter study of consecutively enrolled patients using validated quantitative assessments.Epilepsia. 2011; 52: 2181-2191
- Sudden unexpected death in epilepsy (SUDEP): what every neurologist should know.Epileptic Disord. 2017; 19: 1-9
- The natural history and prognosis of epilepsy.Epileptic Disord. 2015; 17: 243-253
Published online: July 29, 2020
Accepted: May 25, 2020
Received: April 15, 2020
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