Epilepsy & Behavior 9 (2006) 625–631 www.elsevier.com/locate/yebeh
Driving prevalence and factors associated with driving among patients with epilepsy Ramon Edmundo D. Bautista *, Peter Wludyka Comprehensive Epilepsy Program, Department of Neurology, University of Florida Health Sciences Center/Jacksonville, 580 West Eighth Street, Tower One, Ninth Floor, Jacksonville, FL 32209, USA Received 25 July 2006; revised 28 August 2006; accepted 29 August 2006 Available online 6 October 2006
Abstract Purpose. The goal of the work described here was to determine the prevalence of driving and associated variables among patients followed at a level 4 epilepsy center. Method. A survey was mailed out to patients seen at the University of Florida/Jacksonville Comprehensive Epilepsy Program. Results. The study population comprised 308 respondents. Nearly 20% of patients with poorly controlled seizures continued to drive. Although several demographic and clinical variables were associated with driving, on univariate analysis, using multiple logistic regression, being employed, not receiving disability benefits, having less frequent seizures, and taking fewer antiepileptic drugs were the variables independently associated with driving. A subset analysis of patients with poorly controlled seizures indicated that being employed was still an independent factor associated with driving, along with higher annual household income and absence of convulsions and waking seizures. Conclusion. A significant number of patients with poorly controlled seizures drive. Being employed is a major reason these patients continue to drive. 2006 Elsevier Inc. All rights reserved. Keywords: Driving; Employment; Epilepsy; Seizure disorder
1. Introduction Epilepsy is a common neurologic disorder that affects up to 1% of the population [1]. Despite advances in therapy, a significant number of persons with epilepsy continue to experience inadequately controlled seizures [2]. Individuals with poorly controlled seizures who drive are at higher risk for motor vehicular accidents (MVAs). Krauss et al. [3] reported that there is a significantly increased risk of MVAs in persons with epilepsy who have been seizure-free less than one year. Individuals with epilepsy who drive also are at increased risk of sustaining serious injuries as well as nondriver fatalities [4].
*
Corresponding author. E-mail address:
[email protected]fl.edu (R. E. D. Bautista).
1525-5050/$ - see front matter 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2006.08.020
Various state and international laws exist that restrict the ability of individuals with epilepsy to drive [5–7]. Under these laws, the permission to drive is premised on a defined period of seizure freedom and receipt of medical care. In Florida [8], individuals with epilepsy have to be seizure-free for 2 years before being allowed to drive, although this restriction may be decreased to 6 months for patients who receive regular medical care. The inability to drive has repeatedly been shown to be a major concern of individuals who have epilepsy [9–12]. This restriction hampers their ability to work and negatively influences their quality of life. Studies have demonstrated that up to 30% of individuals with poorly controlled seizures continue to drive [13], and there is tendency for patients with epilepsy to underreport their seizure frequency to their physicians [14,15]. In this study, we determined the prevalence of driving among individuals with epilepsy who are seen at the
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University of Florida Health Sciences Center/Jacksonville Comprehensive Epilepsy Program (UFHSCJ-CEP). We also determined those factors associated with driving. Using multiple logistic regression, we identified those variables that are independently associated with driving. 2. Methods The Institutional Review Board of the UFHSCJ and Shands Hospital/ Jacksonville approved this study. The UFHSCJ-CEP is a level 4 epilepsy center located in downtown Jacksonville, FL, USA, and is a major epilepsy referral center for the northeast Florida and southern Georgia region. Forty-two percent of patients seen at the UFHSCJ-CEP are male. Fifty-eight percent are Caucasian, and 31% are African–American. Approximately 40% of patients are part of the city’s indigent care program or recipients of Medicaid/Medicaid HMO programs. Around 5% of patients followed at the UFHSCJCEP have undergone epilepsy surgery and/or vagus nerve stimulator implantation. In September 2005, we mailed out a survey to all patients who were seen at the UFHSCJ-CEP. Using this survey, we obtained the following information on our patient population: • Demographic information: age, gender, marital status, race, highest educational attainment, annual household income, whether the patient is driving, access to transportation, whether the patient receives disability benefits, whether the patient is presently studying and/or receiving vocational training, current employment status, and whether the patient is retired. • Disease related information: age at seizure onset, seizure duration (current age minus age at seizure onset), seizure frequency, whether the patient is experiencing convulsions, whether the patient experiences seizures while awake, number of antiepileptic drugs (AEDs) currently taken, and adverse effects from seizure medications. The Appendix A contains the survey. A reminder postcard was sent to all patients who did not return the survey 2 and 4 weeks after the initial mailing. A second copy of the survey was also mailed out at 4 weeks along with a self-addressed stamped envelope. To include subjects who could not participate because of cognitive slowing or other impairments, we asked caregivers of patients who could not complete the questionnaire to do so on the patients’ behalf. This was done to increase study representation, and enables us to obtain a more accurate description of the demographic and clinical characteristics of our population. Including the complete spectrum of patients with epilepsy in our study (including those suffering from severe impairments) prevents us from obtaining data that are skewed toward individuals who may be higher functioning. This study examined the association between the patient’s current driving situation (target variable) and the other demographic and disease-specific variables (predictor variables) in the survey. Because this study examined factors associated with driving, we limited our analysis only to patients who were 16 years and older.
2.1. Statistical analysis Statistical analyses were performed with SPSS 9.0. We first determined whether our study sample was representative of our patient population by comparing the two groups using v2 analysis along gender and racial (African–Americans and Caucasians, as these make up more than 90% of our patient population) lines. We also determined whether the zip codes of our survey respondents and nonrespondents were similar.
Because surveys were completed by either the patients or their caregivers, we determined whether the trends in responses were similar by testing for homogeneity of odds ratios before consolidating the data from both respondent groups. Using Breslow–Day statistics, we determined whether the associations between driving status and the different predictor variables were similar regardless of who completed the questionnaire. A P value less than 0.05 indicated a nonhomogeneous association between the two respondent groups, and these predictor variables were excluded from further analysis. Univariate statistical analysis of the remaining variables was performed at the 5% level of significance. Testing for the equality of means for interval variables was done using ANOVA (with transformation of certain data to satisfy the assumptions of ANOVA). Ordinal variables were tested using the Mann–Whitney test, and categorical data were analyzed with v2 statistics. Adjusted standardized residuals (ASR) were used as the post hoc comparison method. We also performed multiple logistic regression (using backward elimination with a POUT of 0.1) of significant variables identified by univariate analysis to determine those that retained their significance in the simultaneous context of other variables.
3. Results One thousand three hundred ninety patients were seen at the UFHSCJ-CEP at the time of the study. We sent the survey to 932 patients whose addresses were available. Five hundred eighty-four patients did not return the surveys, and 18 did not wish to participate. Eleven patients had died. Three hundred nineteen (34%) completed the survey, but only 312 of the 319 responses were from patients 16 years of age and older. Of these, only 307 (33%) indicated their work status, and these comprised the study sample. Two hundred one (65.3%) patients completed the questionnaires themselves, and caregivers completed the remaining ones. Among patients who completed the survey themselves, 37.3% drove a motor vehicle, in contrast to only 8.2% of patients whose survey was completed by their caregiver. Demographics and disease characteristics are summarized in Table 1. The mean age was 43, and 42% were males. With respect to race, 59% of our subjects were Caucasian and 33% were African–American. Gender (P = 0.89) and racial (P = 0.81 when comparing Caucasians and African–Americans) distributions of our study sample and the population with epilepsy were similar. Also, the zip codes of survey respondents and nonrespondents were similar (P = 0.157). Nearly 70% of our subjects had less than a college education. Half our subjects had an annual family income less than $10,000. Less than 30% of our subjects drove a motor vehicle, although the majority had access to transportation. Only 31% of our subjects were employed (20% were employed full-time), and half received disability benefits. The mean age at seizure onset was 21 years, and our subjects had experienced seizures for an average of 23 years. More than two-thirds of our subjects had their last seizure within the past year, and the majority (90%) were taking AEDs. Most of our subjects experienced adverse reactions to their AEDs, but only a few (17%) described the reactions as being a major problem.
R.E.D. Bautista, P. Wludyka / Epilepsy & Behavior 9 (2006) 625–631 Table 1 Demographic and clinical variables of respondentsa Outcome variable Driving a motor vehicle, n (%)
88 (28.7)
Predictor variables Demographic data Age, mean (SD) Males, n (%)
43.3 (15.4) 129 (42.4)
Marital status, n (%) Single, Married Divorced Widowed
152 (50.2) 98 (32.2) 34 (11.2) 19 (6.3)
Race/ethnicity, n (%) Caucasian, non-Hispanic African–American non-Hispanic Hispanic Asian–Pacific Islander Native American Other
179 (58.7) 99 (32.5) 5 (1.6) 1 (0.3) 13 (4.3) 8 (2.6)
Highest educational level, n (%) Less than high school High school, no college Some college/associate degree Bachelor/technical degree Graduate/postgraduate
101 (34) 105 (35.4) 52 (17.5) 24 (8.1) 15 (5.1)
Annual household income, n (%) <$10,000 $10,000–$50,000 $50,000–$100,000 >$100,000
150 (51.4) 97 (33.2) 37 (12.7) 8 (2.7)
Has regular access to transportation, n (%) Receives disability benefits, n (%) Current educational status, n (%) Full-time student Part-time student Not a student Retired, n (%) Employed, n (%) Clinical data Age at seizure onset in years, mean (SD) Seizure duration in years, mean (SD) Seizure frequency, n (%) Daily At least once a week At least once a month At least once a year Less than once a year Currently experiences convulsions, n (%) Has seizures while awake, n (%) Seizure medications currently taken, n (%) None 1 2 >2 Experiences side effects from medications, n (%) No Yes, but only a minor inconvenience Yes, and it is a major problem a
Missing items excluded from analysis.
244 (80.8) 150 (49.5) 23 (8.1) 12 (4.2) 250 (87.7) 79 (28.3) 88 (30.8)
20.5 (16.4) 22.6 (18.6) 17(6) 28(10) 66 (23.5) 86 (30.6) 84 (29.9) 171 (59.2) 229 (78.2) 28 (9.2) 120 (39.5) 93 (30.6) 63 (20.7)
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Application of Breslow–Day statistics resulted in a homogeneous odds ratio, regardless of who completed the questionnaire, when looking at the association between driving and age (P = 0.96), gender (P = 0.09), marital status (P = 0.16), race (P = 0.36), highest educational level (P = 0.65), annual household income (P = 0.36), receipt of disability benefits (P = 0.64), retirement (P = 0.15), being employed (P = 0.08), age at seizure onset (P = 0.34), seizure duration (P = 0.9), seizure frequency (P = 0.38), occurrence of convulsions (P = 0.65), having seizures while awake (P = 0.5), number of AEDs currently taken (P = 0.09), and side effects of AEDs (P = 0.34). However, when looking at the association between driving and access to transportation (P = 0.04) and currently being a student (P < 0.01), response trends differed according to who completed the questionnaire. These variables were excluded from further analysis. Table 2 summarizes the results of univariate analysis. Patients who drove were either married, divorced, or widowed, had a higher educational level and annual household income, were employed, and did not receive disability benefits. These patients had developed seizures at an older age and had seizures for a shorter period compared with those who did not drive. They had less frequent seizures, experienced fewer convulsions and seizures while awake, and were taking fewer AEDs. Two hundred eighty-one patients provided information on their seizure frequency: 18.8% (37/197) of patients who experienced more than one seizure a year continued to drive, and 24% (4/17) of patients with daily seizures admitted to driving. Multiple logistic regression of significant variables identified by univariate analysis revealed that being employed (P = 0.01), not receiving disability benefits (P = 0.01), having less frequent seizures (P = 0.01), and taking fewer AEDs (P = 0.02) were factors that were independently and simultaneously associated with driving (Table 3). We performed a subset analysis to determine those variables associated with driving in patients with poorly controlled seizures (having at least one seizure a year). On univariate analysis, the same variables associated with driving in the study sample were also significant among the patients with poorly controlled epilepsy. Multiple logistic regression revealed that being employed (P = 0.02), along with increased annual household income (P = 0.02), absence of convulsions (P = 0.4), and seizures while awake (P = 0.01), continues to be a significant determinant of driving among patients with poorly controlled epilepsy (Table 4).
4. Discussion 135 (46.2) 108 (37) 49 (16.8)
Our study indicated that nearly 20% of patients who had at least one seizure a year continued to drive. Disturbingly, 24% (4/17) of those with daily seizures also admitted to driving.
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Table 2 Comparing characteristics of patients who drive and who do not drivea Univariate analysis variable
Drive
Do not drive
Number of subjects Age, mean (SD) Males, n (%) Marital status, n (%) [ASR]e Single Married Divorced Widowed Race/ethnicity, n (%) Caucasian, non-Hispanic African–American non-Hispanic Hispanic Asian–Pacific Islander Native-American Other Highest educational level, n (%) Less than high school High school, no college Some college/associate degree Bachelor/technical degree Graduate/postgraduate Annual household income <$10,000 $10,000–$50,000 $50,000–$100,000 n (%) >$100,000 Receives disability benefits, n (%) Retired, n (%) Employed, n (%) Age at seizure onset, mean (SD) Seizure duration in years, mean (SD) Seizure frequency, n (%) Daily At least once a week At least once a month At least once a year Less than once a year Currently experiences convulsions, n (%) Has seizures while awake, n (%) Seizure medications currently taken, n (%) None 1 2 >2 Experiences side effects from medications, n (%) No Yes, but only a minor inconvenience Yes, and it is a major problem
88 44.5 (15.4) 39 (44)
219 42.7 (15.4) 90 (42)
27 (31) [ 4.3] 41 (47) [3.4] 11 (13) [0.5] 9 (10) [1.8]
125 (58) 57 (27) 23 (11) 10 (5)
6 (69) 20 (23) 2 (2) 1 (1) 2 (2) 2 (2)
11(54) 79 (37) 3 (1) 0 (0) 11 (5) 6 (2)
a b c d e f
P value 0.37b,c 0.70d <0.01d
0.08d
<0.01f 17 (20) 24 (28) 27 (32) 10 (12) 7 (8)
84 (40) 81 (38) 25 (12) 14 (7) 8 (4) <0.01f
20 (23) 44 (50) 18 (21) 6 (7) 18 (21) 27 (32) 45 (53) 27.8 (19.2) 15.9 (14.4)
130 (64) 53 (26) 19 (9) 2 (1) 132 (62) 52 (27) 43 (21) 20.6 (18.1) 22.3 (16.8)
4 (5) 2 (3) 7 (9) 24 (31) 40 (52) 38 (46) 54 (63)
13 (6) 26 (13) 59 (29) 62 (30) 44 (22) 133 (65) 175 (85)
15 (17) 48 (55) 18 (21) 6 (7)
13 72 75 57
44 (51) 29(34) 13 (15)
91 (44) 79 (38) 36 (18)
<0.01d 0.47d <0.01d <0.01b,c <0.01b,c <0.01f
<0.01d <0.01d <0.01f
(6) (33) (35) (26) 0.3f
Missing data excluded from analysis. ANOVA. Square root transformation. v2 test. ASR = adjusted standardized residuals: divorced, married, widowed > single. Mann–Whitney test.
Certain clinical factors such as decreased seizure frequency and taking fewer AEDs are independently associated with driving. These factors are indicative of the good seizure control and disease management generally expected among persons with epilepsy who drive. However, our study also revealed that economic factors, such as being employed and not receiving disability benefits, are also
independent determinants of driving. In this study, 51% of patients who were employed drove, compared with 20% of those who were unemployed. Forty-six percent of those who did not receive disability benefits drove, compared with 12% of those who received disability benefits. The association between driving and employment is also seen among our subjects with poorly controlled seizures.
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Table 3 Multiple logistic regression of variables associated with drivinga in all epilepsy patients Variable
Constant Currently employed Not receiving disability Decreased seizure frequency Fewer AEDsb a b
B
Sig
2.4983 1.0977 1.0939 0.4615 0.5720
Odds ratio
0.0972 0.0103 0.0124 0.0124 0.0151
3.0 2.99 1.59 1.77
95% CI for odds ratio Lower
Higher
1.30 1.27 1.10 1.12
6.94 7.04 2.28 2.81
Variables with P 6 0.05 using univariate analysis were included in analysis. Antiepileptic medications.
Table 4 Multiple logistic regression of variables associated with drivinga in patients with poorly controlled epilepsy Variable
Constant Not experiencing seizures while awake Currently employed Higher annual household income Not experiencing convulsions a
B
Sig
1.8392 1.7739 1.5302 0.8195 1.1290
0.3463 0.0126 0.0163 0.0215 0.0395
Odds ratio
5.89 4.62 2.27 3.09
95% CI for odds ratio Lower
Higher
1.46 1.33 1.13 1.06
23.75 16.1 4.56 9.06
Variables with P 6 0.05 using univariate analysis were included in analysis.
According to univariate analysis, other variables such as a higher educational attainment and later onset of seizures were significantly associated with driving. Although not attaining statistical significance using multivariable regression, these associations did suggest that the reason individuals with epilepsy continue to drive are complex and that certain patients, such as those who develop seizures at a younger age, are better able to cope with the restrictions of epilepsy than those with later-onset seizures. Our methodology did not allow us to determine whether being employed is a cause or a consequence of a higher annual household income, or whether the association between driving and higher household income seen among patients with poorly controlled epilepsy is causative or merely reflects that increased family resources make driving more possible. However, these associations are consistent with our societal regard of the importance of work as a means of improving one’s economic standing and the perceived necessity of being able to drive as a prerequisite to working. The prevalence of driving among patients who continue to have seizures is significant and is similar to that seen in other studies [13,16]. Having a driver’s license has been associated with increased rates of employment among Finns with epilepsy [17]. In a New Zealand study, Stanaway and colleagues [16] reported that 9 of 21 (43%) patients with epilepsy who had an MVA were driving as a necessity of employment. Berg and colleagues [13] studied patients with refractory epilepsy undergoing epilepsy surgery evaluation in several major epilepsy centers in the United States. Interestingly, their study demonstrated that except for patients engaged in irregular/seasonal work,
employment was not a significant predictor of driving. Our study is the first to highlight the significance of employment as an independent predictor of driving and extends this association to patients with poorly controlled seizures. The results of this study are significant both from a legal perspective (such as determining how effectively driving laws are being enforced and the reasons for continuing noncompliance) and from the perspective of determining how to improve the productivity of patients with epilepsy without increasing their risk of MVAs. Being able to drive and work has frequently been cited as a major concern of individuals with epilepsy [9–12]. Being employed contributes to a patient’s sense of well-being [18]. Paradoxically, being unemployed has also been associated with a larger number of MVAs, possibly due to stress-related effects [19]. Our study suggests that it is important to develop measures to overcome the limits imposed by not being able to drive if persons with epilepsy are to become more productive. One method of improving the productivity of persons with epilepsy is to encourage home-based employment opportunities. Another is to develop and promote the use of a public transportation system that is more convenient and accessible for persons with epilepsy who desire to work. Several programs already exist that help persons with epilepsy integrate into the work force through job training and placement [20]. However, these programs do not address the need for a reliable public transportation system to further enhance the productivity of persons with epilepsy. In fact, the lack of regard for the use of public
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transportation in many areas in the United States is a significant issue for persons with epilepsy. Despite the progress made since the Americans with Disabilities Act of 1990 was passed, the consistent lack of a reliable public transportation system in most US cities has been acknowledged as one of the main barriers preventing the full integration of disabled individuals in the workplace [21]. Our study has several limitations. Our patients were being followed at a level 4 epilepsy center and likely have more severe epilepsy compared with those seen at a primary care or general neurology clinic. Nearly 30% of our study sample had poorly controlled seizures, and more than 20% were taking more than two seizure medications. A third of our study sample had less than a high school education, while around half had an annual household income under $10,000 and received disability benefits. These and other socioeconomic and cultural characteristics may be unique to our patient population seen in downtown Jacksonville, and not necessarily representative of those encountered in other epilepsy programs. Using a well-accepted survey methodology [22], we obtained a response rate of 33%. However, our study sample is representative of our patient population based on the similar gender and racial distributions. Also, the zip codes of survey responders and nonresponders were similar, suggesting similar socioeconomic conditions. To increase study representation (especially of patients who may not be able to complete surveys due to cognitive problems), we had to obtain survey data from both patients and caregivers. However, we analyzed only the data with respond trends that were homogeneous for the two groups. Our study indicates that a significant number of patients with poorly controlled seizures continue to drive and that being employed is a major reason these individuals continue to do so. Developing ways to keep patients with epilepsy productive yet safe should remain a priority for all those who care for these individuals.
5.
6.
7.
8.
9.
10.
11.
Acknowledgment This study was supported by the Dean’s Grant for Faculty Development, University of Florida HSC/ Jacksonville. Appendix A. Survey questions 1. How old are you ? ______ years 2. What is your gender? a. Male b. Female 3. What is your marital status? a. Single b. Married c. Divorced d. Widowed 4. What is your race? a. Caucasian, non-Hispanic
12.
13. 14.
b. African–American, non-Hispanic c. Hispanic d. Asian–Pacific Islander e. Native-American f. Other What is your highest educational level (choose one) a. Less than high school diploma b. High school diploma, no college c. Some college/associate degree d. Bachelor degree or technical degree e. Graduate/postgraduate education What is your annual household income? a. Less than $10,000 b. Between $10,000 and $50,000 c. Between $50,000 and $100,000 d. More than $100,000 Do you regularly drive a motor vehicle? a. Yes b. No Do you have convenient access to transportation (public facilities, family, friends)? a. Yes b. No Are you currently on disability? a. Yes b. No What statement best applies to you? a. I am presently a full-time student or receiving work-related training (full-time). b. I am currently a part-time student or receiving part-time training. c. I am not a student and not presently receiving any work-related training. Check the following statement that applies to you (choose one): a. I currently work for pay for more than 35 h a week in an employment or a family/self managed business enterprise (exclude volunteer work, housework, or student activities). b. I currently work for pay for less than 35 h a week in an employment or a family/self managed business enterprise (exclude volunteer work, housework, or student activities). c. I am currently unemployed but actively looking for work. d. I am unemployed and not looking for work. What statement best applies to you? a. I am retired. b. I am not retired. How old were you when your seizures began? _____ years old. How often do you have seizures? (on average) a. Daily b. Less than daily but more than once a week c. Less than once a week to more than once a month d. Less than once a month to more than once a year e. Less than once a year
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15. Do you experience convulsions/grand mal seizures? a. Yes b. No 16. Do you experience seizures while awake? a. Yes b. No 17. How many seizure medications are you currently taking? a. None b. One c. Two d. More than two 18. Do you experience side effects from your seizure medications? a. No b. Yes, but it is only a minor inconvenience c. Yes, and it is a major problem (Choose one) This questionnaire was filled out by the: a. Patient b. Caregiver References [1] Hauser WA. Epidemiology of epilepsy. Adv Neurol 1978;19:313–9. [2] Kadir ZA, Chadwick DW. Principles of treatment of epilepsy. Drugs Today 1999;35:35–41. [3] Krauss GL, Krumholz A, Carter RC, Kaplan P. Risk factors for seizure-related motor vehicle crashes in patients with epilepsy. Neurology 1999;52:1324–9. [4] Taylor J, Chadwick D, Johnson T. Risks of accidents in drivers with epilepsy. J Neurol Neurosurg Psychiatry 1996;60:621–7. [5] Fisher RS, Parsonage M, Beaussart M, et al. for the Joint Commission on Driver’s licensing of the international bureau for epilepsy and the international league against epilepsy. Epilepsy and driving: an international perspective. Epilepsia 1994;35:675–84.
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