TRANSITION OF EPILEPSY CARE FROM CHILDREN TO ADULTS

Transition: Driving and exercise *Lina Nashef, †Giuseppe Capovilla, ‡Carol Camfield, ‡Peter Camfield, and §Rima Nabbout Epilepsia, 55(Suppl.3):41–45, 2014 doi: 10.1111/epi.12717

SUMMARY There are many social aspects to consider at the time of transition of adolescents with epilepsy. The role of both pediatric and adult health care providers includes education and guidance within the larger framework of family, society, and country. This section focuses on driving and exercise considerations for those undergoing transition. KEY WORDS: Epilepsy, Driving license, Risk-taking behavior, Sports, Exercise, Obesity, Transition. Dr. Lina Nashef is a Consultant Neurologist and reader with a special interest in Epilepsy at King’s College Hospital, London, United Kingdom.

A young person with epilepsy needs to achieve seizure control for a long enough period to be legally allowed to prepare for a driving test and obtain a license. In the epilepsy transition/transfer clinic setting, the physician needs to consider medical aspects, information provision, driving eligibility, as well as make a preliminary assessment of driving ability for those with additional impairment (Table 1). When there is doubt about the patient’s ability to drive, this can be assessed in specialized centers.

Driving Driving is an important determinant of health-related quality of life for both adolescents and adults. For the young, a driver’s license can be viewed as a rite of passage to adulthood and a marker of independence. It may be needed for employment, whether in an urban or rural area, and is essential for certain types of jobs; it is also needed for transporting family members and for access to leisure activities. Seizure control, associated physical disorders, and intellectual ability, as well as risk-taking behaviors influence the discussion on driving at the time of transition or transfer.1,2

Review of diagnosis Transition offers the opportunity for the physician to reassess the diagnosis and optimize treatment. In a study of a teenage clinic, 207 patients (aged 11–22) were referred with “definite or probable epilepsy.”3 Epilepsy was the eventual diagnosis in 173 (84%). Four had single seizures. “Nonepilepsy” diagnoses (n = 30) included syncope, nonepileptic attack disorder, and migraine. Epilepsy had been previously erroneously diagnosed in eight (4%). Existing antiepileptic drug (AED) treatment, or lack of it, was considered appropriate in 165 (80%), and major changes in treatment were made in 42 (20%). Although in this study, only 4% had been previously misdiagnosed as having epilepsy, this

Accepted June 3, 2014. *Department of Neuroscience, King’s College Hospital, London, United Kingdom; †Department of Child Neuropsychiatry, Epilepsy Center, C. Poma Hospital, Mantua, Italy; ‡Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada; and §Reference Center for Rare Epilepsies, Pediatric Neurology Department, Hospital Necker – Enfants Malades, Paris, France Address correspondence to Lina Nashef, Department of Neuroscience, King’s College Hospital, London SE59RS, U.K. E-mail: lina.nashef@nhs. net Wiley Periodicals, Inc. © 2014 International League Against Epilepsy

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Key Points Driving  Evaluation of diagnosis, seizure control, comorbid neurologic disorders including attention-deficit/hyperactivity disorder (ADHD) and intellectual ability, as well as risk-taking behaviors needs to be considered when advice regarding driving is given. Information on local driving regulations and legal liability needs to be provided. Exercise  There is uncertainty if people with epilepsy are more sedentary than the rest of the population. Exercise rarely exacerbates seizures, and there is limited evidence that it may improve seizure control.  Exercise often improves the comorbidities of anxiety and depression.  Transition discussions can advocate exercise while offering some guidance about safer activities.

Table 1. Considerations in clinic in relation to driving at transition Aspirations What are the expectations/aspirations of the individual in this regard? Are the aspirations realistic in relation to driving eligibility and ability? Are the aspirations supported by family members? How do they influence medical or surgical management? Diagnosis Is there diagnostic uncertainty—can this be investigated and resolved? Is there misdiagnosis? Is there dual diagnosis? Is the individual or public at risk from either of these diagnoses? Treatment Can treatment be improved to optimize control or reduce side effects? Is withdrawal being considered? Can timing of withdrawal be optimized to take into account the planned driving test? Information Local driving regulations Legal obligations, liability, and consequences of driving outside the law Travel concessions Future employment and residence in relation to driving

nevertheless represents an important group to identify because they may be permitted to drive. Driving regulations and legal liability Discussion of driving regulations is necessary. These regulations constantly evolve, as regulatory bodies, at least within the European Union, seek to harmonize regulations and make them more evidence based. In the United Kingdom (UK), regulations have been modified in line with a European directive (Table 2). Generally, patients with epilepsy need to be seizure-free for 1 year to be eligible to Epilepsia, 55(Suppl.3):41–45, 2014 doi: 10.1111/epi.12717

apply for an ordinary (group 1) driving license and to be off medication with no seizures for 10 years for heavy goods/ public service vehicles (group 2) license. The new changes include the concept of a very narrowly defined “permitted seizure.” The regulations regarding driving for those with epilepsy are similar in the United States (Table 3) and Canada. Unfortunately, vehicle accidents do occur due to seizures in people with epilepsy. Although some may be unavoidable, others may occur when someone drives without a legal license or without reporting the epilepsy when applying for a license. Others may inappropriately withdraw their AEDs without abstaining from driving. Driving regulations and legal responsibilities, including criminal liability in the case of accident, need to be discussed at transition and later reinforced. Such discussions require time and clarity from the health provider and engagement on the part of the patient. Medical management and AED treatment For those adolescents who are seizure-free and considering drug withdrawal at the time of the clinic visit(s), it is important to consider the timing of the driving test before recommending or initiating withdrawal. Is there time for the completion of withdrawal and the recommended 6month wait (at least in the UK) after withdrawal before driving can commence? If not, would the person prefer to obtain his or her license before withdrawing? These are individual decisions for the patient to make. A realistic estimate of seizure recurrence rate in adolescents and adults after discontinuation is ~30%,4,5 and a single study suggests that this rate of recurrence remains at 30% after a second period of seizure freedom followed by withdrawal.5 If seizures recur after AED discontinuation, reinstitution of treatment leads to a good outcome in most but not all patients, with 90% again attaining another 2-year remission.5 Evidently, seizure control then needs to be maintained for the driver’s license to remain valid. It is likely that for those whose control depends on good adherence to treatment and a regular lifestyle, having a goal to obtain a driving license may well act as an incentive. At the time of transition it is important to emphasize lifestyle factors known to prevent breakthrough seizures that are relevant to adolescents. These include ensuring sufficient and regular sleep, limiting alcohol intake, and adhering to AED medication. Discussion may also include advice regarding avoidance of nonprescription medications which could affect level of alertness and illicit drugs. In patients with refractory epilepsy, the prognosis and realistic prospects of achieving seizure freedom need to be addressed and, as appropriate, treatment optimized.5 In those with very mild simple partial seizures or brief absences, whose more severe seizures are fully controlled on medication, there may be conflict between what is best for the patient and the need to fulfil the driving regulations.

43 Driving and Exercise Table 2. UK epilepsy driving regulations Requirements for an Ordinary License (Group 1) – Adapted from UK “At A Glance Guide,” DVLA (www.dvla.gov.uk/ dvla/medical/aag.aspx), summer 2013 Epilepsy – 1 year seizure freedom Isolated seizure – 1 year seizure freedom if an underlying causative factor that may increase future risk is identified and 6 months if none are identified “Permitted” seizures include: A “medication adjustment seizure,” where previously effective medication has been reinstated for at least 6 months A pattern of seizures occurring during sleep For at least 1 year and there has never been an unprovoked seizure while awake Or occurring during sleep only for 3 years Without influence on consciousness or the ability to act . . . for at least 1 year, and there has never been any other type of unprovoked seizure

Comorbidity Additional considerations relate to comorbidity. These include the following: (1) Does the individual have the intellectual ability to drive appropriately? Given time, individuals with learning disorders often are able to pass the written test and learn to drive. Others with more severe disability, sufficient to preclude driving, can have alternative aspirations encouraged. (2) Those with physical disabilities, as already stated, may require assessment at specialist centers and specially adapted vehicles. Physical comorbidities might include visual field loss or lack of binocular vision, slowed reaction time, and physical or sensory limitations. There are many publications that address risk-taking behavior in young people in general including “risky motor vehicle behaviors,” such as mobile device use, drinking, and not wearing seatbelts. Higher accident rates

are reflected in high insurance premiums for young drivers, especially male drivers. Of interest is whether the adolescent with epilepsy is more likely to engage in risk-taking behavior. A Norwegian population-based questionnaire study of 19,995 adolescents (age range 13–19 years), of whom 247 had a history of epilepsy, looked at risk-taking behavior.6 Such behavior was reported more often in the epilepsy group with 8.3% (1.0% in controls; p < 0.001) reporting daily alcohol consumption, 12.4% (5.5% of controls; p < 0.001) having tried illegal substances, and 19.7% (8.5% in controls; p < 0.001) having committed criminal offenses (fight with weapon, burglary, or threats to obtain money). The risktaking behavior, however, was gender dependent; girls with epilepsy were similar to the control group. Children and adolescents at the time of onset of epilepsy have more impulsive behavior and are often diagnosed with attention-deficit/hyperactivity disorder (ADHD). A classic study examined 175 children with epilepsy (aged 9–14 years) with at least a 6-month history.7 The Child Behavior Checklist (CBCL) and several other measures of childhood behavior were used for assessment. The study found that 64/175 (37%) exhibited the Diagnostic and Statistical Manual, fourth edition (DSM-IV) criteria for ADHD, and most had symptoms of the hyperactive inattentive type of attention deficit disorder. Gender, seizure type, and focus of interictal spike discharge were not predictors of symptoms of ADHD. In adults, similar findings can be found.8 A survey was mailed to 340,000 American households to determine the lifetime prevalence of epilepsy and other comorbid behavioral disorders of adults 18 years of age or older. Of the 172,959 respondents, 2% had previously a diagnosis of epilepsy. Of those with epilepsy, 13% had previously been diagnosed with ADHD, as compared with 5% of the general

Table 3. United States epilepsy driving regulations: These may vary from state to state (adapted from www.epilepsy.com) Licensing of people with epilepsy A person with epilepsy must be free of seizures that affect consciousness for a certain period of time, often at least 1 year. Recently, shorter intervals of seizure freedom are being required, for example 3 to 6 months Usually, the physician who cares for the person with epilepsy must fill out a form with the date of last seizure, seizure type, and other relevant information. Some states ask for the doctor’s recommendation about the person’s ability to drive. Others leave this to the Department of Motor Vehicles (DVM), while the medical professional provides the epilepsy information The review and decision process In most states, the medical information and license application is reviewed by the state’s DMV. In complex cases, or when the decision is not clear, information is forwarded to a consulting doctor or the state’s medical advisory board Commercial driver’s licenses The U.S. Department of Transportation allows people with a history of epilepsy who have been seizure-free off medication for 10 years to obtain a commercial driver’s license Personal Liability A person with epilepsy may be civilly or criminally liable for a motor vehicle accident caused by seizures. Liability may occur when a person drives. . . Against medical advice Without a valid license Without notifying the state department of motor vehicles of the medical condition, or with the knowledge that he or she is prohibited from driving

Epilepsia, 55(Suppl.3):41–45, 2014 doi: 10.1111/epi.12717

44 L. Nashef et al. population. These examples demonstrate the frequency and prevalence of ADHD. The same actions considered helpful in ADHD in general can be applied to driving, namely “staying on task.” Suggestions in ADHD at the time of transition include the following: (1) avoiding distractions (limiting music sources and choices; limiting number of passengers, not using cell phones or texting) and planning trips in advance; (2) adhering to ADHD medication; and (3) avoiding driving when rushed, angry, or feeling depressed or anxious. There are several helpful references available on the Internet that include suggestions for the initial training of the beginning driver with ADHD9 and teen–parent driving contracts for those driving.10

Exercise Regular exercise clearly benefits weight control and overall health, both physical and mental. Rates of obesity in people with epilepsy are at least as high as the general population at the time of diagnosis.11 There is some suggestion that adults with epilepsy have a more sedentary life style than others; however, the evidence is somewhat contradictory with two population-based studies finding no difference.12–14 The way in which people with epilepsy are involved in exercise seems to differ from controls, with less time spent in team activities and more time in activities such as walking.12–14 The increased walking may be for transportation reasons, since uncontrolled epilepsy precludes a driver’s license. Does regular exercise have particular effects for people with epilepsy? There are few patients with epilepsy who have documented increases in seizure frequency with exercise (perhaps 2% of adults with epilepsy13). This concern may lead to advice to avoid competitive sports, although we are unaware of publications that clearly indicate the degree of risk of injury if a person with epilepsy should have a seizure during a competitive sporting activity. Swimming (competitive or recreational) poses the hazard of drowning and mandates close supervision. There is little information about epilepsy and sports at high altitude, which may induce hypoxia, or prolonged intense physical activity, such as marathon running, which may induce metabolic disturbances such as hyponatremia. Although animal models of epilepsy show reduced seizures with exercise, data in humans remains somewhat inconclusive.15 One study of 12 patients with juvenile myoclonic epilepsy found a significant reduction in spike-wave discharges for 25 min following exercise to exhaustion. A self-reported study of outpatients with epilepsy indicated that about one third thought that their seizures were reduced by regular exercise.13 Exercise programs for people with epilepsy appear to decrease the common comorbidities of anxiety and depression and improve quality of life, although the longest intervention study lasted only 12 weeks.15–17 Despite incomplete information, discussions and guidance Epilepsia, 55(Suppl.3):41–45, 2014 doi: 10.1111/epi.12717

about exercise remain an important part of the transition process. During school age in many countries, exercise and sports are part of the school curriculum. When school ends, adults with or without epilepsy need to organize their own exercise activities. Encouraging exercise for general health is clearly desirable. It would appear important to carefully document if a patient suspects that their uncontrolled seizures are worsened by exercise. Otherwise, it is reasonable to encourage an exercise program. There is only limited evidence that this may improve seizure control. If patients with epilepsy have anxiety or depression, however, there is stronger evidence that an exercise program may be beneficial. At the time of transition and after transfer, discussion about the dangers of various sports for people with controlled and uncontrolled epilepsy is important to avoid injury but also to avoid exclusion from enjoyable and health-enhancing activities. Any advice and encouragement needs to take into account the degree of seizure control and the individual and family’s attitude toward risk. The ILAE Task Force on Sports and Epilepsy was created in 2011 and chaired by Dr. Guiseppe Capovilla (Italy). This commission is expected to produce a position paper about the medical and legal issues for the practice of sport for people with epilepsy. The proposal will hopefully consider sports in the following several categories: (1) “no risk,” which generally include sports at ground level; (2) “moderate risk,” such as cycling or swimming, and (3) “major risk,” such as high diving, motor sports, horseback riding, or parachuting. Such guidance will be welcome, although better evidence to underpin advice is needed.

Conclusion The issues related to driving and exercise are of major importance to the young person with epilepsy, yet these are often not addressed in a timely fashion or at all. Situations and circumstances vary greatly and advice needs to be tailored to the individual. Regrettably, there are few data on which to base guidance.

Disclosure None of the authors has any conflict of interest to disclose. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

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The MRC Antiepileptic Drug Withdrawal Group. Epilepsia 1996;37:1043–1050. Camfield P, Camfield C. The frequency of intractable seizures after stoppingAEDs in seizure-free children with epilepsy. Neurology 2005;64:973–978. Alfstad K A, Clench-Aas J, Van Roy B, et al. Gender differences in risk-taking behaviour in youth with epilepsy: a Norwegian populationbased study. Acta Neurol Scand Suppl 2011;191:12–17. Dunn DW, Austin JK, Harezlak J, et al. ADHD and epilepsy in childhood. Dev Med Child Neurol 2003;45:50–54. Ottman R, Lipton RB, Ettinger AB, et al. Comorbidities of epilepsy: results from the Epilepsy Comorbidities and Health (EPIC) survey. Epilepsia 2011;52:308–315. ADDitude strategies and support for ADHD & LD. Discipline Your Teens Can Live With. Available at: http://www.additudemag.com/ adhd/article/4627.html/. Accessed July 21, 2014. ADDitude Strategies and Support for ADHD & LD. Driving Contract. Available at: http://www.additudemag.com/adhd-web/article/579. html/. Accessed July 21, 2014.

11. Janousek J, Barber A, Goldman L, et al. Obesity in adults with epilepsy. Epilepsy Behav 2013;28:391–394. 12. Gordon KE, Dooley JM, Brna PM. Epilepsy and activity–A population-based study. Epilepsia 2010;51:2254–2259. 13. Nakken KO. Physical exercise in outpatients with epilepsy. Epilepsia 1999;40:643–651. 14. Elliott JO, Lu BJ, Moore JL, et al. Exercise, diet, health behaviors, and risk factors among persons with epilepsy based on the California Health Interview Survey, 2005. Epilepsy Behav 2008;13: 307–315. 15. Arida RM, de Almeida GAC, Cavalheiro EA, et al. Experimental and clinical findings from physical exercise as complementary therapy for epilepsy. Epilepsy Behav 2013;26:273–278. 16. Roth DL, Goode KT, Williams VL, et al. Physical exercise, stressful life experience, and depression in adults with epilepsy. Epilepsia 1994;35:1248–1255. 17. Eriksen HR, Ellertsen B, Grønningsaeter H, et al. Physical exercise in women with intractable epilepsy. Epilepsia 1994;135:1256–1264.

Epilepsia, 55(Suppl.3):41–45, 2014 doi: 10.1111/epi.12717

Transition: driving and exercise.

There are many social aspects to consider at the time of transition of adolescents with epilepsy. The role of both pediatric and adult health care pro...
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