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1. 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

Author

Enia, G, Giussani, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, Lattanzi, S, La, N, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, Bravar, G, Enia G., Giussani G., Bianchi E., Mecarelli O., Beghi E., Pulitano P., Cagnetti C., Baldinelli S., Lattanzi S., La N. A., Tappata M., Francavilla T., De Maria G., Sofia V., Giuliano L., Mainieri G., Fatuzzo D., Belcastro V., Elia M., D'Orsi G., Lalla A., Salmaggi A., Brigo F., Magaudda A., Pisani F. G. S., Pisani L. R., Raffaele M., Cosenza D., Villani F. S., Quintas R. M. M., Cervellione R., Borroni S., Meletti S., Ferrarese C., Barbella G., Di Francesco J., Bogliun G., Beretta S., Galimberti C. A., Cantisani T. A., Cecconi M., Celani M. G., Papetti R., Giorgi F. S., Aguglia U., Gasparini S., Ferlazzo E., Manganotti P., Crichiutti G., Bravar G., Enia, G, Giussani, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, Lattanzi, S, La, N, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, Bravar, G, Enia G., Giussani G., Bianchi E., Mecarelli O., Beghi E., Pulitano P., Cagnetti C., Baldinelli S., Lattanzi S., La N. A., Tappata M., Francavilla T., De Maria G., Sofia V., Giuliano L., Mainieri G., Fatuzzo D., Belcastro V., Elia M., D'Orsi G., Lalla A., Salmaggi A., Brigo F., Magaudda A., Pisani F. G. S., Pisani L. R., Raffaele M., Cosenza D., Villani F. S., Quintas R. M. M., Cervellione R., Borroni S., Meletti S., Ferrarese C., Barbella G., Di Francesco J., Bogliun G., Beretta S., Galimberti C. A., Cantisani T. A., Cecconi M., Celani M. G., Papetti R., Giorgi F. S., Aguglia U., Gasparini S., Ferlazzo E., Manganotti P., Crichiutti G., and Bravar G.

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

Published
2021

2. 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

Author

Giussani, G, Enia, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, La Neve, A, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Galletta, S, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, Bravar, G, Giussani G., Enia G., Bianchi E., Mecarelli O., Beghi E., Pulitano P., Cagnetti C., Baldinelli S., La Neve A., Tappata M., Francavilla T., De Maria G., Sofia V., Giuliano L., Mainieri G., Fatuzzo D., Belcastro V., Elia M., D'Orsi G., Lalla A., Salmaggi A., Brigo F., Magaudda A., Pisani F., Galletta S., Pisani L. R., Raffaele M., Cosenza D., Villani F. S., Quintas R. M. M., Cervellione R., Borroni S., Meletti S., Ferrarese C., Barbella G., Di Francesco J., Bogliun G., Beretta S., Galimberti C. A., Cantisani T. A., Cecconi M., Celani M. G., Papetti R., Giorgi F. S., Aguglia U., Gasparini S., Ferlazzo E., Manganotti P., Crichiutti G., Bravar G., Giussani, G, Enia, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, La Neve, A, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Galletta, S, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, Bravar, G, Giussani G., Enia G., Bianchi E., Mecarelli O., Beghi E., Pulitano P., Cagnetti C., Baldinelli S., La Neve A., Tappata M., Francavilla T., De Maria G., Sofia V., Giuliano L., Mainieri G., Fatuzzo D., Belcastro V., Elia M., D'Orsi G., Lalla A., Salmaggi A., Brigo F., Magaudda A., Pisani F., Galletta S., Pisani L. R., Raffaele M., Cosenza D., Villani F. S., Quintas R. M. M., Cervellione R., Borroni S., Meletti S., Ferrarese C., Barbella G., Di Francesco J., Bogliun G., Beretta S., Galimberti C. A., Cantisani T. A., Cecconi M., Celani M. G., Papetti R., Giorgi F. S., Aguglia U., Gasparini S., Ferlazzo E., Manganotti P., Crichiutti G., and Bravar G.

Abstract

Purpose: The purpose of this study was to assess the priorities of patients with epilepsy and caring physicians and the correspondence between these priorities. Methods: In this multicenter cross-sectional study, patients with epilepsy attending 21 Italian epilepsy centers and their caring physicians filled anonymously questionnaires on the needs and priorities in the management of the disease. Included were questions on patients' demographics, diagnosis, treatment, and outcome of epilepsy. The concordance between patients and their physicians was assessed on various aspects of the diagnosis and care of the disease. Patients' satisfaction with communication, services, and patient–doctor relationship was also assessed. Results: Included were 432 women and 355 men aged 15 to 88 years (median: 41 years). Disease duration ranged from 6 months to 75 years. A structural/metabolic etiology predominated (52.7%), followed by a (presumed) genetic etiology (33.0%). Seizure remission was present in 56.5% of cases. Comorbidities requiring chronic treatment were present in 27.5%, and comorbidities affecting self-sufficiency in 9.5%. Psychiatric comorbidity was present in 35.0%. Patients' priorities included discovery of the cause (89.1%), use of right drug (98.7%), use of a drug without chronic side effects (94.0%), and a life without restrictions (90.4%). Physicians' priorities included choice of right drug (83.5%) and use of drugs without chronic side effects (86.8%). Priorities varied with patients' age, sex, education, and occupation. Patient–doctor relationships were at least good in most cases. The information imparted was considered unsatisfactory by 21–44% of cases on seizure circumstances and complications, side effects of drugs, limitations of daily activities, and management of physiologic or pathologic conditions. Patients declared overall satisfaction, except for appointments (21.5%) and emergencies (30.8%). Conclusion: Patients and physicians' priorities in the mana

Published
2020

3. 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

Author

Enia, G., Giussani, G., Bianchi, E., Mecarelli, O., Beghi, E., Pulitano, P., Cagnetti, C., Baldinelli, S., Lattanzi, S., La Neve, A., Tappata, M., Francavilla, T., De Maria, G., Sofia, V., Giuliano, L., Mainieri, G., Fatuzzo, D., Belcastro, V., Elia, M., D'Orsi, G., Lalla, A., Salmaggi, A., Brigo, F., Magaudda, A., Pisani, F., Galletta, S., Pisani, L. R., Raffaele, M., Cosenza, D., Villani, F. S., Quintas, R. M. M., Cervellione, R., Borroni, S., Meletti, S., Ferrarese, C., Barbella, G., Di Francesco, J., Bogliun, G., Beretta, S., Galimberti, C. A., Cantisani, T. A., Cecconi, M., Celani, M. G., Papetti, R., Giorgi, F. S., Aguglia, U., Gasparini, S., Ferlazzo, E., Manganotti, P., Crichiutti, G., Bravar, G., Enia, G, Giussani, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, Lattanzi, S, La, N, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, and Bravar, G

Subjects
Adult, Male, medicine.medical_specialty, Adolescent, Concordance, Need, Disease, Epilepsy, Needs, Patients, Physicians, Priorities, Newly diagnosed epilepsy, Young Adult, 03 medical and health sciences, Behavioral Neuroscience, 0302 clinical medicine, Seizures, Anticonvulsant, medicine, Humans, 030212 general & internal medicine, Young adult, Aged, Aged, 80 and over, Patient, Prioritie, business.industry, Middle Aged, Caregiver, medicine.disease, Seizure, Clinical Practice, Caregivers, Italy, Neurology, Physician, Recurrent seizures, Family medicine, Population study, Anticonvulsants, Female, Neurology (clinical), business, 030217 neurology & neurosurgery, Human
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.

Published
2021

4. 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

Author

Giorgia Giussani, Gabriele Enia, Elisa Bianchi, Oriano Mecarelli, Ettore Beghi, Patrizia Pulitano, Claudia Cagnetti, Sara Baldinelli, Simona Lattanzi, Angela La Neve, Maria Tappatà, Teresa Francavilla, Giovanni De Maria, Vito Sofia, Loretta Giuliano, Greta Mainieri, Daniela Fatuzzo, Vincenzo Belcastro, Maurizio Elia, Giuseppe D'Orsi, Alessandra Lalla, Andrea Salmaggi, Francesco Brigo, Adriana Magaudda, Francesco Pisani, Santi Galletta, Laura R. Pisani, Massimo Raffaele, Domenico Cosenza, Flavio S. Villani, Rui M.M. Quintas, Rosa Cervellione, Simona Borroni, Stefano Meletti, Carlo Ferrarese, Giuseppina Barbella, Jacopo Di Francesco, Graziella Bogliun, Simone Beretta, Carlo A. Galimberti, Teresa A. Cantisani, Michela Cecconi, Maria G. Celani, Rossella Papetti, Filippo S. Giorgi, Umberto Aguglia, Sara Gasparini, Edoardo Ferlazzo, Paolo Manganotti, Giovanni Crichiutti, Giulia Bravar, Giussani, G., Enia, G., Bianchi, E., Mecarelli, O., Beghi, E., Pulitano, P., Cagnetti, C., Baldinelli, S., La Neve, A., Tappata, M., Francavilla, T., De Maria, G., Sofia, V., Giuliano, L., Mainieri, G., Fatuzzo, D., Belcastro, V., Elia, M., D'Orsi, G., Lalla, A., Salmaggi, A., Brigo, F., Magaudda, A., Pisani, F., Galletta, S., Pisani, L. R., Raffaele, M., Cosenza, D., Villani, F. S., Quintas, R. M. M., Cervellione, R., Borroni, S., Meletti, S., Ferrarese, C., Barbella, G., Di Francesco, J., Bogliun, G., Beretta, S., Galimberti, C. A., Cantisani, T. A., Cecconi, M., Celani, M. G., Papetti, R., Giorgi, F. S., Aguglia, U., Gasparini, S., Ferlazzo, E., Manganotti, P., Crichiutti, G., Bravar, G., Giussani, G, Enia, G, Bianchi, E, Mecarelli, O, Beghi, E, Pulitano, P, Cagnetti, C, Baldinelli, S, La Neve, A, Tappata, M, Francavilla, T, De Maria, G, Sofia, V, Giuliano, L, Mainieri, G, Fatuzzo, D, Belcastro, V, Elia, M, D'Orsi, G, Lalla, A, Salmaggi, A, Brigo, F, Magaudda, A, Pisani, F, Galletta, S, Pisani, L, Raffaele, M, Cosenza, D, Villani, F, Quintas, R, Cervellione, R, Borroni, S, Meletti, S, Ferrarese, C, Barbella, G, Di Francesco, J, Bogliun, G, Beretta, S, Galimberti, C, Cantisani, T, Cecconi, M, Celani, M, Papetti, R, Giorgi, F, Aguglia, U, Gasparini, S, Ferlazzo, E, Manganotti, P, Crichiutti, G, and Bravar, G

Subjects
Adult, Male, Pediatrics, medicine.medical_specialty, Activities of daily living, Adolescent, Patients, Concordance, Satisfaction, Need, Disease, 03 medical and health sciences, Behavioral Neuroscience, Psychiatric comorbidity, Epilepsy, Young Adult, 0302 clinical medicine, Genetic etiology, Seizures, Physicians, Surveys and Questionnaires, Medicine, Humans, Epilepsy Needs, 030212 general & internal medicine, Aged, Aged, 80 and over, Health Services Needs and Demand, Physician-Patient Relations, business.industry, Prioritie, Communication, Needs, Priorities, Disease Management, Middle Aged, medicine.disease, Clinical Practice, Cross-Sectional Studies, Neurology, Italy, Socioeconomic Factors, Etiology, Female, Neurology (clinical), business, 030217 neurology & neurosurgery
Abstract

Purpose The purpose of this study was to assess the priorities of patients with epilepsy and caring physicians and the correspondence between these priorities. Methods In this multicenter cross-sectional study, patients with epilepsy attending 21 Italian epilepsy centers and their caring physicians filled anonymously questionnaires on the needs and priorities in the management of the disease. Included were questions on patients' demographics, diagnosis, treatment, and outcome of epilepsy. The concordance between patients and their physicians was assessed on various aspects of the diagnosis and care of the disease. Patients' satisfaction with communication, services, and patient–doctor relationship was also assessed. Results Included were 432 women and 355 men aged 15 to 88 years (median: 41 years). Disease duration ranged from 6 months to 75 years. A structural/metabolic etiology predominated (52.7%), followed by a (presumed) genetic etiology (33.0%). Seizure remission was present in 56.5% of cases. Comorbidities requiring chronic treatment were present in 27.5%, and comorbidities affecting self-sufficiency in 9.5%. Psychiatric comorbidity was present in 35.0%. Patients' priorities included discovery of the cause (89.1%), use of right drug (98.7%), use of a drug without chronic side effects (94.0%), and a life without restrictions (90.4%). Physicians' priorities included choice of right drug (83.5%) and use of drugs without chronic side effects (86.8%). Priorities varied with patients' age, sex, education, and occupation. Patient–doctor relationships were at least good in most cases. The information imparted was considered unsatisfactory by 21–44% of cases on seizure circumstances and complications, side effects of drugs, limitations of daily activities, and management of physiologic or pathologic conditions. Patients declared overall satisfaction, except for appointments (21.5%) and emergencies (30.8%). Conclusion Patients and physicians' priorities in the management of epilepsy overlap only in part. Patients are satisfied with their caring physicians and less satisfied with communication and management of routine and emergency problems.

Published
2020

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