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Car drivers with epilepsy (Pilot Hungarian EPIMED Database Evaluation)
Epilepsy & Behavior Epilepsy & Behavior 4 (2003) 761–763 www.elsevier.com/locate/yebeh
Brief Communication
Car drivers with epilepsy (Pilot Hungarian EPIMED Database Evaluation) va Vargyai,d Peter Rajna,a,* Andr as S olyom,b L aszl o Mez} ofi,c E e f Kozma, and Peter Tariska L aszlo a
Department of Psychiatry and Psychotherapy, General Medical Faculty, Semmelweis University, Balassa u.6, H-1083 Budapest, Hungary b National Institute of Neurosurgery, Budapest, Hungary c ‘‘Kaposi M or’’ Hospital, Kaposv ar, Hungary d ‘‘Markhot Ferenc’’ Hospital, Eger, Hungary e Hennax Ltd, Budapest, Hungary f National Institute for Neurology and Psychiatry, Budapest, Hungary Received 14 March 2003; revised 2 June 2003; accepted 10 June 2003
Abstract We investigated aspects of driving among Hungarian patients with epilepsy. Nineteen percent (148/753) of our population had a driving license (DL), including 26% (38/148) who used it. Among persons without a DL, 29% (178/605) desired one. Among those who drove (n ¼ 38), 24 worked and 8 had experienced seizures in the last 3 months. Each of these seizures occurred during sleep (5/8), were preceded by known auras and warning signs (2/8), or were provoked by extreme external factors (1/8). Ó 2003 Elsevier Inc. All rights reserved. Keywords: Epilepsy; Driving; Driving license; Epilepsy database; Warning signs; Seizure
1. Introduction The ability to drive is an important factor in maintaining an acceptable quality of life and therefore has particular relevance to adult patients with epilepsy [1]. Driving expands the potential for securing work and enjoying leisure activities. In Hungary, driving is associated with elevated social status. During the Socialist period, owning a car represented a certain level of wealth. Therefore, even today, one of the principal desires of young adults in Hungary is to drive a car. As representatives of the Hungarian section of the ILAE, we were active participants in the discussion on the amendment of legislation concerning the driving ability of patients with epilepsy [2,3]. To obtain accurate data regarding driving among Hungarian patients with epilepsy, we analyzed the EPIMED Hungarian Database (EHD). The aims of this * Corresponding author. Fax: +36-1-21-00-336. E-mail address: [email protected] (P. Rajna).
1525-5050/$ - see front matter Ó 2003 Elsevier Inc. All rights reserved. doi:10.1016/S1525-5050(03)00158-6
study were to determine the attitudes of people with chronic epilepsy toward driving and to assess the proportion of people with epilepsy driving legally and their seizure histories.
2. Population and method The EHD was developed from 1994 to 1999 by the Epilepsy Centre of the Department of Psychiatry and Psychotherapy, Faculty of Medicine, Semmelweis University, to provide a uniform system for collecting data on epileptic outpatients [4,5]. In addition to the usual demographic, diagnostic, and other epilepsy-specific variables, the EHD contains more fields pertaining to the social and psychological aspects of epilepsy than other databases [6]. At the time of this study, the EHD contained data on 1078 patients from approximately 4000 clinic visits, comprising over 1500 patient-years. Data for analysis were collected from four Hungarian epilepsy centers at
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Brief Communication / Epilepsy & Behavior 4 (2003) 761–763
which the co-authors were affiliated. All data were derived from clinic visits attended by specially trained epilepsy nurses or epileptologists. The inclusion criteria were age >17 years, diagnosis of epilepsy with more than one seizure, and greater than 6 months of followup (three medical visits minimally). Seven hundred eighty-eight patients fulfilled the inclusion criteria. We extracted demographic and epilepsy-specific data (e.g., seizure and syndrome classification, seizure frequency, etiological and diagnostic data, treatments). In addition, we recorded items relevant to the first study aim (Items A/16/1-4 DL: does not have a DL and does not want to get one, does not but would like to get one, has a DL but is not using it, has a DL and uses it). To address the second aim, we then analyzed the EHD data on patients who actually use their DLs and compared these data with the list of patients with driving licenses. Considering the small number of patients of this group, we did not undertake a statistical evaluation. We corroborated their data with personal interviews.
3. Results 3.1. Possession of DL and attitude toward driving Nineteen percent (148/753) of our population have DL and 26% (38/148) of this group use them. Of those who use their DL, the mean age was 37 (21–64) and there were 29 males and 9 females. Of the 605 patients without DLs, 178 (29%) would like to get one when possible. 3.2. Drivers with epilepsy Twenty-four of the 38 patients who drive are employed, including 20 whose jobs match their qualifications. Review of their seizure types revealed simple partial seizures in 9, complex partial seizures in 8, generalized tonic-clonic seizures with focal onset (FGTCSs) in 9, generalized tonic-clonic seizures (GTCSs) in 6, myoclonic absence seizures in 1, and other types in 5 persons. We evaluated the presence of ‘‘safety factors’’ with respect to the occurrence of their seizures and found that 8 patients experienced seizures exclusively during sleep and 5 others had definitive warning signs preceding at least 75% of their seizures. An additional 8 patients mentioned obligatory provoking factors or warning signs before at least 50% of their attacks that allowed them to take precautions when they drive. At the time of their last clinic visits, 8 patients reported seizures (i.e., which had occurred within the previous 3 months): 5 of these seizures, including all the GTCS/FGTCS, occurred during or around sleep, 2 were predicted by known auras and warning signs, and 1 was provoked by extreme external factors.
4. Discussion For adult patients with epilepsy, the ability to drive is very important [7]. A study of 706 epileptic and 662 healthy persons in seven European countries showed that a surprisingly high proportion of the population with epilepsy had a DL (44 vs 67%) [8]. In many countries, however, driving regulations are extremely strict; some countries forbid people with any epileptic symptoms from driving a vehicle or enter the diagnosis in driving records [9]. The roles of physicians in restricting driving among patients with psychogenic nonepileptic seizures [10] and in telling authorities or patientsÕ families when patients drive illegally remain controversial [11]. In this study, 19% of patients with epilepsy had a DL, but only 26% of those patients with a DL actually used it. Therefore a sizable proportion of patients with a DL did not currently drive. Our findings contrast with those of a multinational study in which 30% of drivers with epilepsy actually drove, the majority of whom were young people who had acquired a valid DL earlier [12]. Irrespective of their age, gender, and severity of illness, 29% (178/605) of our sample who did not have a DL wished to obtain one. Other studies have shown that the desire to obtain a DL is especially high among young patients [13] and candidates for epilepsy surgery [14]. Of the 38 patients with DLs who drove regularly, the majority used a car in connection with their work. While a small percentage of these drivers reported seizures at their last clinic visit, it was notable that their seizures occurred exclusively during sleep, were preceded by prodromal/ warning signs, or did not impair unconsciousness. We conclude that nearly a third of all patients entered in the EHD would like to obtain a driving license, another one in five has a DL, but only a third of them actually use it. Drivers with epilepsy reported infrequent seizures, which by their description occurred only during sleep or without impairing consciousness. We believe that the current Hungarian driving regulations are quite effective because they allow expert evaluation of a patientÕs epilepsy. However, further and more detailed studies are necessary to determine which epilepsy syndromes are particularly likely to affect a patientÕs ability to drive. Acknowledgments We thank Judit Veres and Hajnal Kiss for their preparation of the manuscript.
References [1] Gilliam F, Kuzniecky R, Faught E, Black L, Carpenter G, Schrodt R. Patient-validated context of epilepsy-specific qualityof-life measurement. Epilepsia 1997;38:233.
Brief Communication / Epilepsy & Behavior 4 (2003) 761–763 [2] Regulation and Instructions of Ministry of Health on the Medical Evaluation of Driving Ability, I.20 6th enclosure, 10th paragraph, 1976. [3] Rajna P. Investigation and evaluation of driving ability. (Hun) Ideggy ogy aszati Szemle 1994;47(7–8):271–8. [4] Rajna P, Hal asz P. Everyday problems in the treatment and care of epilepsy. (Hun) Orvosi Hetilap 1979;120:133–8. [5] Rajna P, Hal asz P, Kundra O. Unified documentation: convergent care plan for standardization of the Hungarian epilepsy documentation. (Hun) Nepegeszseg€ ugy 1982;63:171–6. , et al. EPIMED 3.0—Hungarian [6] Rajna P, Veres J, Csibri E Epilepsy Database and Patient Documentation System. (Hun) Clin Neurosci/Ideggy ogy Szemle 2001;54(9/10):271–82. [7] Fisher RS, Vickrey BG, Gibson P, et al. The impact of epilepsy from the patientÕs perspective I. Descriptions and subjective perceptions. Epilepsy Res 2000;41:39–51. [8] The RESt-1 Group. Social aspects of epilepsy in the adult in seven European countries. Epilepsia 2000;41:998–1004.
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[9] Ooi WW, Gutrecht JA. International regulations for automobile driving and epilepsy. J Travel Med 2000;7(1):1–4. [10] Benbadis SR, Blustein JN, Sunstad L. Should patients with psychogenic nonepileptic seizures be allowed to drive? Epilepsia 2000;41:895–7. [11] Beran RG. Confidentiality and the management of patients with epilepsy who fail to comply with doctorÕs advice not to drive: a survey of medical/legal opinions in Australia. Seizure 1998;7:459– 68. [12] Berg AT, Vickrey BG, Sperling MR, et al. Driving in adults with refractory localization-related epilepsy. Multi-center study of epilepsy surgery. Neurology 2000;54:625–30. [13] Arunkumar G, Wyllie E, Kotagal P, Ong HT, Gilliam F. Parentand patient-validated content for pediatric epilepsy quality-of-life assessment. Epilepsia 2000;41:1474–84. [14] Taylor DC, McMacKin D, Staunton H, Delanty N, Phillips J. PatientsÕ aims for epilepsy surgery: desires beyond seizure freedom. Epilepsia 2001;42:629–33.
Brief Communication
Car drivers with epilepsy (Pilot Hungarian EPIMED Database Evaluation) va Vargyai,d Peter Rajna,a,* Andr as S olyom,b L aszl o Mez} ofi,c E e f Kozma, and Peter Tariska L aszlo a
Department of Psychiatry and Psychotherapy, General Medical Faculty, Semmelweis University, Balassa u.6, H-1083 Budapest, Hungary b National Institute of Neurosurgery, Budapest, Hungary c ‘‘Kaposi M or’’ Hospital, Kaposv ar, Hungary d ‘‘Markhot Ferenc’’ Hospital, Eger, Hungary e Hennax Ltd, Budapest, Hungary f National Institute for Neurology and Psychiatry, Budapest, Hungary Received 14 March 2003; revised 2 June 2003; accepted 10 June 2003
Abstract We investigated aspects of driving among Hungarian patients with epilepsy. Nineteen percent (148/753) of our population had a driving license (DL), including 26% (38/148) who used it. Among persons without a DL, 29% (178/605) desired one. Among those who drove (n ¼ 38), 24 worked and 8 had experienced seizures in the last 3 months. Each of these seizures occurred during sleep (5/8), were preceded by known auras and warning signs (2/8), or were provoked by extreme external factors (1/8). Ó 2003 Elsevier Inc. All rights reserved. Keywords: Epilepsy; Driving; Driving license; Epilepsy database; Warning signs; Seizure
1. Introduction The ability to drive is an important factor in maintaining an acceptable quality of life and therefore has particular relevance to adult patients with epilepsy [1]. Driving expands the potential for securing work and enjoying leisure activities. In Hungary, driving is associated with elevated social status. During the Socialist period, owning a car represented a certain level of wealth. Therefore, even today, one of the principal desires of young adults in Hungary is to drive a car. As representatives of the Hungarian section of the ILAE, we were active participants in the discussion on the amendment of legislation concerning the driving ability of patients with epilepsy [2,3]. To obtain accurate data regarding driving among Hungarian patients with epilepsy, we analyzed the EPIMED Hungarian Database (EHD). The aims of this * Corresponding author. Fax: +36-1-21-00-336. E-mail address: [email protected] (P. Rajna).
1525-5050/$ - see front matter Ó 2003 Elsevier Inc. All rights reserved. doi:10.1016/S1525-5050(03)00158-6
study were to determine the attitudes of people with chronic epilepsy toward driving and to assess the proportion of people with epilepsy driving legally and their seizure histories.
2. Population and method The EHD was developed from 1994 to 1999 by the Epilepsy Centre of the Department of Psychiatry and Psychotherapy, Faculty of Medicine, Semmelweis University, to provide a uniform system for collecting data on epileptic outpatients [4,5]. In addition to the usual demographic, diagnostic, and other epilepsy-specific variables, the EHD contains more fields pertaining to the social and psychological aspects of epilepsy than other databases [6]. At the time of this study, the EHD contained data on 1078 patients from approximately 4000 clinic visits, comprising over 1500 patient-years. Data for analysis were collected from four Hungarian epilepsy centers at
762
Brief Communication / Epilepsy & Behavior 4 (2003) 761–763
which the co-authors were affiliated. All data were derived from clinic visits attended by specially trained epilepsy nurses or epileptologists. The inclusion criteria were age >17 years, diagnosis of epilepsy with more than one seizure, and greater than 6 months of followup (three medical visits minimally). Seven hundred eighty-eight patients fulfilled the inclusion criteria. We extracted demographic and epilepsy-specific data (e.g., seizure and syndrome classification, seizure frequency, etiological and diagnostic data, treatments). In addition, we recorded items relevant to the first study aim (Items A/16/1-4 DL: does not have a DL and does not want to get one, does not but would like to get one, has a DL but is not using it, has a DL and uses it). To address the second aim, we then analyzed the EHD data on patients who actually use their DLs and compared these data with the list of patients with driving licenses. Considering the small number of patients of this group, we did not undertake a statistical evaluation. We corroborated their data with personal interviews.
3. Results 3.1. Possession of DL and attitude toward driving Nineteen percent (148/753) of our population have DL and 26% (38/148) of this group use them. Of those who use their DL, the mean age was 37 (21–64) and there were 29 males and 9 females. Of the 605 patients without DLs, 178 (29%) would like to get one when possible. 3.2. Drivers with epilepsy Twenty-four of the 38 patients who drive are employed, including 20 whose jobs match their qualifications. Review of their seizure types revealed simple partial seizures in 9, complex partial seizures in 8, generalized tonic-clonic seizures with focal onset (FGTCSs) in 9, generalized tonic-clonic seizures (GTCSs) in 6, myoclonic absence seizures in 1, and other types in 5 persons. We evaluated the presence of ‘‘safety factors’’ with respect to the occurrence of their seizures and found that 8 patients experienced seizures exclusively during sleep and 5 others had definitive warning signs preceding at least 75% of their seizures. An additional 8 patients mentioned obligatory provoking factors or warning signs before at least 50% of their attacks that allowed them to take precautions when they drive. At the time of their last clinic visits, 8 patients reported seizures (i.e., which had occurred within the previous 3 months): 5 of these seizures, including all the GTCS/FGTCS, occurred during or around sleep, 2 were predicted by known auras and warning signs, and 1 was provoked by extreme external factors.
4. Discussion For adult patients with epilepsy, the ability to drive is very important [7]. A study of 706 epileptic and 662 healthy persons in seven European countries showed that a surprisingly high proportion of the population with epilepsy had a DL (44 vs 67%) [8]. In many countries, however, driving regulations are extremely strict; some countries forbid people with any epileptic symptoms from driving a vehicle or enter the diagnosis in driving records [9]. The roles of physicians in restricting driving among patients with psychogenic nonepileptic seizures [10] and in telling authorities or patientsÕ families when patients drive illegally remain controversial [11]. In this study, 19% of patients with epilepsy had a DL, but only 26% of those patients with a DL actually used it. Therefore a sizable proportion of patients with a DL did not currently drive. Our findings contrast with those of a multinational study in which 30% of drivers with epilepsy actually drove, the majority of whom were young people who had acquired a valid DL earlier [12]. Irrespective of their age, gender, and severity of illness, 29% (178/605) of our sample who did not have a DL wished to obtain one. Other studies have shown that the desire to obtain a DL is especially high among young patients [13] and candidates for epilepsy surgery [14]. Of the 38 patients with DLs who drove regularly, the majority used a car in connection with their work. While a small percentage of these drivers reported seizures at their last clinic visit, it was notable that their seizures occurred exclusively during sleep, were preceded by prodromal/ warning signs, or did not impair unconsciousness. We conclude that nearly a third of all patients entered in the EHD would like to obtain a driving license, another one in five has a DL, but only a third of them actually use it. Drivers with epilepsy reported infrequent seizures, which by their description occurred only during sleep or without impairing consciousness. We believe that the current Hungarian driving regulations are quite effective because they allow expert evaluation of a patientÕs epilepsy. However, further and more detailed studies are necessary to determine which epilepsy syndromes are particularly likely to affect a patientÕs ability to drive. Acknowledgments We thank Judit Veres and Hajnal Kiss for their preparation of the manuscript.
References [1] Gilliam F, Kuzniecky R, Faught E, Black L, Carpenter G, Schrodt R. Patient-validated context of epilepsy-specific qualityof-life measurement. Epilepsia 1997;38:233.
Brief Communication / Epilepsy & Behavior 4 (2003) 761–763 [2] Regulation and Instructions of Ministry of Health on the Medical Evaluation of Driving Ability, I.20 6th enclosure, 10th paragraph, 1976. [3] Rajna P. Investigation and evaluation of driving ability. (Hun) Ideggy ogy aszati Szemle 1994;47(7–8):271–8. [4] Rajna P, Hal asz P. Everyday problems in the treatment and care of epilepsy. (Hun) Orvosi Hetilap 1979;120:133–8. [5] Rajna P, Hal asz P, Kundra O. Unified documentation: convergent care plan for standardization of the Hungarian epilepsy documentation. (Hun) Nepegeszseg€ ugy 1982;63:171–6. , et al. EPIMED 3.0—Hungarian [6] Rajna P, Veres J, Csibri E Epilepsy Database and Patient Documentation System. (Hun) Clin Neurosci/Ideggy ogy Szemle 2001;54(9/10):271–82. [7] Fisher RS, Vickrey BG, Gibson P, et al. The impact of epilepsy from the patientÕs perspective I. Descriptions and subjective perceptions. Epilepsy Res 2000;41:39–51. [8] The RESt-1 Group. Social aspects of epilepsy in the adult in seven European countries. Epilepsia 2000;41:998–1004.
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[9] Ooi WW, Gutrecht JA. International regulations for automobile driving and epilepsy. J Travel Med 2000;7(1):1–4. [10] Benbadis SR, Blustein JN, Sunstad L. Should patients with psychogenic nonepileptic seizures be allowed to drive? Epilepsia 2000;41:895–7. [11] Beran RG. Confidentiality and the management of patients with epilepsy who fail to comply with doctorÕs advice not to drive: a survey of medical/legal opinions in Australia. Seizure 1998;7:459– 68. [12] Berg AT, Vickrey BG, Sperling MR, et al. Driving in adults with refractory localization-related epilepsy. Multi-center study of epilepsy surgery. Neurology 2000;54:625–30. [13] Arunkumar G, Wyllie E, Kotagal P, Ong HT, Gilliam F. Parentand patient-validated content for pediatric epilepsy quality-of-life assessment. Epilepsia 2000;41:1474–84. [14] Taylor DC, McMacKin D, Staunton H, Delanty N, Phillips J. PatientsÕ aims for epilepsy surgery: desires beyond seizure freedom. Epilepsia 2001;42:629–33.