CHAPTER 33 management of status epilepticus on the intensive care unit 347 be advisable to supplement the electroencephalographic and cardi- opulmonary monitoring by neuroimaging (magnetic resonance imaging, digital volumetric imaging) and invasive modern n euro- monitoring techniques such as intracranial pressure measurement (allowing cerebral pe rfusion pressure management), tissue oxygen measurement, brain temperature measurement, or even microdi- alysis with monitoring of metabolic developments (brain tissue lactate, pyruv ate/lactate ratio, glucose, glycerin, etc.). Whether the regular measurement of biomarkers of brain tissue destruction as S 100 or neuronal speci \201 c enolase add to a potential o ptimization of management needs to be studied. Substances that are used regularly in any ICU, and also in neuro- logical ICUs, that can re duce seizure threshold might be the \201 nal trigger to provoke \200\224 in an ICU \200 \224 a SE. Such substances are antibi- otics, antipsychotics and antidepressants, and these are listed in Table 33.1 . References 1. De Giorgio Ch , Faught E , Fujikawa DG , Vespa PM . Status epilepticus . In: Noseworthy JH (ed) Neurological Therapeutics, Principles and Practice ( 2nd edn), pp. 3 75 \200\223 84 . Oxford : Informa Healthcare , 2006 . 2. Robakis TK , Hirsch LJ . Literature review, case report, and expert discussion of prolonged refractory status epilepticus . Neurcrit Care 2006 ; 4 : 35 \200 \223 46 . As soon as SE is suspected, be it overt GCSE or non-convulsive status or subtle SE, continu ous EEG monitoring should be initi- ated. All type of status epileptici need to be treated aggressively. The term subtle SE has been introduced in patients with severe structural bra in damage who do not awake from coma after pro- longed intensive care medicine and who do s how subtle motor movement like eye lid twitching or a deviation noted only when eye lids ar e lifted and which frequently cannot be discovered by video-monitoring or clinical examinat ion alone. Such status epi- leptici with even waxing and waning of consciousness may go unn oticed for days. Therefore, EEG monitoring in a suspected patient should be established at the earliest possible point of time. Neurologists usually accurately diagnose convulsive SE . However, psychogenic SE can mimic the clinical manifestation of a GCSE and can even lead to intubation and use of barbiturates. It should be noted that in psychogenic SE, dysautono mia or lateral tongue biting, which are characteristic of GCSE are absent, and the perio- d icity of the \200\230tonic \200\223clonic \200\231 movements is replaced by \202 ailing and rocking movements. The typical lactic acidosis seen in prolonged GCSE is also absent in psychogenic SE patients. Video-EEG moni- toring con \201 rms the suspected diagnosis. 3. Wijdicks EFM . The Clinical Practice of Critical Care Neurology ( 2nd edn). Oxford : Oxford University Press , 2003 . 4. Kreft A , Rasmussen N , Hansen LK . Refractory status epilepticus in two children with l ethal rhabdomyolysis . Ugeskr Laeger 2008 ; 170 : 3339 . 5. Wijdicks EFM . Catastrophic Neu rologic Disorders in the Emergency Department . Oxford : Oxford University Press . 2004 . 6. Neligan A , Shorvon SD . Prognostic factors, morbidity and mortality in tonic-clonic sta tus epilepticus: a review . Epilepsy Res 2011 ; 93 : 1 \200\223 10 . 7. Neligan A , Shorvo n SD . Frequency and prognosis of convulsive status epilepticus of different causes: a syst ematic review . Arch Neurol 2010 ; 67 : 931 \200\223 40 . 8. Tan RY , Neligan A , Shorvon SD . The uncommon causes of status epilepticus: a systemati c review . Epilepsy Res 2010 ; 91 : 111 \200\223 22 . 9. Meierkord H , Boon P , Engelsen B , G cke K , Shorvon S , Tinuper P , et al . European Federation of Neurological Societies. EFNS guideline on the management of status epilepticus in adults . Eur J Neurol 2010 ; 17 : 348 \200\223 55 . 10. Holtkamp M . Treatment strategies for refractory status epilepticus . Curr Opin Crit Care 2011 ; 17 : 94 \200\223 100 . 11. Belda FJ , Aguilar G , Teboul JL , Pesta a D , Redondo FJ , Malbrain M , et al . for t he PICS Investigators \200\231 Group. Complications related to less- invasive haemodynamic monitoring . Br J Anaesth 2010 ; 106 : 482 \200\223 6 . 12. Arnold HM , Hollands JM , Skru pky LP , Mice ST . Optimizing sustained use of sedation in mechanically ventilated patients : focus on safety . Curr Drug Saf 2010 ; 5 : 6 \200\223 12 . 13. Gassanov N , Caglayan E , Nia A , Erdmann E . The PiCCO catheter . Table 33.1 Pharmaceutical agents used in intensive care units (even neurointensive care uni ts) that may reduce seizure threshold Dtsch Med Wochenschr 2010 ; 135 : 2311 \200\223 4 . 14. Hadian M , Kim HK , Severyn DA , Pinsky MR . Cross-comparison of Antibiotics Imipenem cardiac output trending accuracy of LiDCO, PiCCO, FloTrac and pulmonary artery catheters . Crit Care 2010 ; 14 ( 6 ):R212. Nor \202 oxacin 15. Proulx F , Lemson J , Choker G , Tibby SM ( 2011 ). Hemodynamic Cipro \202 oxacin monitoring by transpulmonary thermodilution and pulse contour analysis in critically ill ch ildren . Pediatr Crit Care Med 2011 ; 12 ( 4 ): 459 \200\223 66 . Cefepime Penicillin derivatives 16. Benenson S , Temper V , Cohen MJ , Schwartz C , Hidalgo-Grass C , Block C . Imipenem di sc for the detection of KPC carbapenemase- producing Enterobacteriaceae in clinical practic e . J Clin Microbiol 2011 ; 49 ( 4 ): 1617 \200\223 20 . Betalactam antibiotics as cefepime, Antidepressants Amitriptyline Doxepin 17. Fircanis S , McKay M . Recognition and management of extended spectrum beta lactamase producing organisms (ESBL) . Med Health RI 2010 ; 93 ( 5 ): 161 \200\223 2 . Nortriptyline Fluoxetine, sertraline 18. Oteo J , P rez-V zquez M , Campos J . Extended-spectrum [beta]- lactamase producing Escherichia coli: changing epidemiology and clinical impact . Curr Opin Infect Dis 2010 ; 23 : 320 \200\223 6 . Antipsychotics Chlorpromazine Haloperidol 19. Fodale V , La Monaca E . Propofol infusion syndrome: An overview of a Thioridazine perplexing disease . Drug Safety 2008 ; 4 : 293 \200\223 303 . 20. Guitton C , Gabillet L , Latour P , Rigal JC , Boutoille D , Al Habash O , Perphenazine et al . Propofol infusion syndrome during refractory status epilepticus in a young adult: S uccessful ECMO Resuscitation . Neurocrit Care 2011 ; 15 : 139 \200\223 45 . Tri \202 uoperazine Modi \201 ed after Wijdicks (3). oxford textbook of epilepsy and epileptic seizures 348 27. Pr ss H , Holkamp M . Ketamine successfully terminates malignant 21. Roberts RJ , Barletta JF , Fong JJ , Schumaker G , Kuper PJ , Papadopoulos S , et al . Incidence of propofol-related infusion syndrome in critically ill adults: a prospective, mu lticenter study . Crit Care 2009 ; 13 : R169 . 22. Wong J . Propofol infusion syndrome . Am J Therapeutics 2010 ; 17 : 487 \200\223 status epilepticus . Epilepsy Res 2008 ; 82 : 219 \200\223 22 . 28. Walker IA , Slovis CM . Lidocaine in the treatment of status epilepticus . Acad Emerg Med 1997 ; 4 : 918 \200\223 22 . 91 . 29. Hattori H , Yamano T , Hayashi K , Osawa M , Kondo K , Aihara M , et al . Effectiveness of lidocaine infusion for status epilepticus in childhood: a retrospective multi-instituti onal study in Japan . Brain Dev 2008 ; 30 : 504 \200\223 12 . 23. Baumeister FA , Oberhoffer R , Liebhaber GM , Kunkel J , Eberhardt J , Holthausen H , e t al . Fatal propofol infusion syndrome in association with ketogenic diet . Neuropediatric s 2004 ; 35 : 250 \200\223 2 . 30. Fugate JE , Burns JD , Wijdicks EF , Warner DO , Nakowski CJ , 24. Parke TJ , Stevens JE , Rice AS , Greenaway CL , Bray RJ , Smith PJ , et al . Metabolic acidosis and fatal myocardial failure after propofol infusion in children: \201 ve case reports . BMJ 1992 ; 305 : 613 \200\223 16 . Rabinstein AA . Prolonged high-dose iso \202 urane for refractory status epilepticus: is i t safe? Anesth Analg 2010 ; 111 : 1520 \200\223 4 . 31. Bleck TP . Hypothermia, hyperthermia, and other systemic factors in 25. Zarovnaya EL , Jobst BC , Harris BT . Propofol-associated fatal myocardial failure and rhabdomyolysis in an adult with status epilepticus . Epilepsia 2007 ; 48 : 1002 \200\223 6 . status epilepticus . Epilepsia 2009 ; 50 (Suppl 12):10 . 32. Wheless JW . Treatment of refractory convulsive status epilepticus in children: other t herapies . Semin Pediatr Neurol 2010 ; 17 : 190 \200\223 4 . 26. Renaud DL , Clarke JTR . Metabolic myopathies . In: Noseworthy JH (ed) Neurological The rapeutics, Principles and Practice ( 2nd edn), pp. 2657 \200\223 68 . Oxford : Informa Hea lthcare , 2006 . CHAPTER 34 Epilepsy and Employment Ann Jacoby Introduction Being employed is an important ingredient in the quality of life of people wit h epilepsy (1). Conversely, unemployment has been shown to be a major source of stress and increased psychopathol- ogy (2). Research into the issue of employment of people with epi- lepsy has generally presented a somewhat bleak account, with those affected appearing at ri sk in terms of both \201 nding and maintaining employment (3), with obvious consequences for their socioeco- nomic status. People with epilepsy appear well aware of the risks, with employment coming near the top of the list of their concerns about the everyday implicatio ns of their condition (4). However, some brighter \201 ndings include that unemployment r ates for epi- lepsy are lower than for other disabilities; and that among people with well- controlled seizures uncomplicated by other handicaps, employment rates may reach near-norma l. than the general population and as a direct consequence, of lower socioeconomic status (10 \200\22312); and there is evidence that in the US at least rates of employment have changed little over recent dec- ades (9). Jennum et al. (10) examined the impact for employment an d earnings of having epilepsy across almost 65,000 patients with epilepsy identi \201 ed v ia the Danish National Patient registry and gender-matched controls. They found a greater p roportion of epi- lepsy patients than controls were in receipt of social welfare bene- \201 ts, and a lower proportion of their earned income came from employment. Interestingly, epilepsy patients were less likely to be in employment not just in the post-diagnosis peri od, but also prior to the diagnosis of their epilepsy. It is also the case that some people with epilepsy are more disad- vantaged in terms of emp loyment than others \200\224 thus experiencing frequent seizures (13 \200\22316), being on multiple antiepileptic medica- tions (16), seizure onset in childhood and adolescence (10, 16), chronological age and gender (10), having other comorbidities (17, 18) and poor self- rated health (13, 19), have all been implicated in increased disadvantage. People with epil epsy have also been shown to be at increased risk of unemployment during time periods and i n geographical areas of general high unemployment (20, 21). This chapter will address the objective evidence about employ- ment rates and status in peo ple with epilepsy; consider the employ- ment concerns of people with epilepsy and situate t he problems they face within the broader issue of epilepsy stigma; examine the evidence aro und internal and external factors which in \202 uence employability; and suggest what can be done to improve employ- ment prospects people with epilepsy. Of course, epilepsy is not alone among conditions of ill-health in its propensity to genera te employment problems for those affected, as a recently reported study reminds us (22). Us ing multivariate modeling techniques, Maslow and colleagues (22) compared adult social, edu cational, and vocational outcomes in young adults with and without childhood-onset chronic illness (cancer, heart disease, diabetes, and epilepsy). They found that compared to contro ls, those with childhood-onset chronic illness had similar odds of being married or having other romantic relationships, having chil- dren, and living with their parents; but had low er odds of graduat- ing from higher education, being employed and being higher earners and, conversely, higher odds of being in receipt of welfare bene \201 ts. These authors conclu de that the contrast between social \200\230success \200\231 for those with chronic illnes s and their educational and occupational \200\230failure \200\231 relative to those withou t such illness suggests reasons for under and unemployment in this group are complex, multi factorial, and involve a range of contextual factors, all of which need to be further inves tigated and better understood. The role of employment for good quality of life Being in employment is an important ingredi ent of overall quality of life, providing a sense of identity and purpose, personal status, and enhanced self-esteem (5). Conversely, unemployment has been shown to be a major source of stress, mental ill-health including depression, and physical ill-health (6, 7). Under- and unemployment represent wasted human potential and reduced societal productivity and the costs of under and unemployment in people with epilepsy have been shown to be high (8 \200 \22310). It has been noted that the employment problems of people with epilepsy, \200\230c annot be reduced to one factor; they are, rather, the result of a bundle of adverse factors , interacting with each other in a complex fashion \200\231 (11). Examination of the literature on employability of people with epilepsy presents a somewhat bleak picture. People with epilepsy have consistently been shown to be at risk of higher un employment Accepting the generality of the problem, it is nevertheless the case that employment status is a major concern of people with oxford textbook of epilepsy and epileptic seizures 350 be lower, for both men and women, at all three time points for assessment (study entry and 2 and 4 years subsequently), suggest- ing substantial employment disadvantage from the outs et. However, once again there was also clear evidence that the effects of epilepsy for empl oyability are not uniform \200\224 thus, at all three time points, employment status was p redicted by greater seizure frequency and poorer self-rated health. Of those in employment at \201 nal follow-up, three-quarters reported having had no further sei- zures since ent ry to the study. Examination of employment transi- tions across the course of the study rev ealed that there was relatively little mobility in/out of the labor market \200\224 those initially in work tended to remain so, as did those who were initially unemployed. Furtherm ore, those in professional or managerial posts appeared had more favorable employment traje ctories than other workers, with the greatest proportion of individuals always employed and the smallest proportion never employed or losing a job after entry to the study (Table 34. 1 ). epilepsy themselves and a major contributor to their quality of life (23 \200\22325). Colli ngs (23) identi \201 ed employment (being in a secure and worthwhile job, which utilizes o ne \200\231s personal abilities) as the third most cited source of life ful \201 lment, af ter having a good family life and possessing self-con \201 dence; and Bishop et al. (24) f ound employment status to be highly correlated with both mental well- being scores and over all quality of life. Most recently, Tlusta et al. (25) reported that employment status expl ained 10 % of the vari- ance in overall quality of life, as measured using the QOLIE-31, an d was the strongest predictor of emotional well-being and energy/fatigue subscale scores. I n the study by Gilliam et al. (26), over half of people with epilepsy interviewed identi \201 ed issues around employment as a major concern for them; and Bishop (27) subsequently identi \201 ed that such concerns spanned three broad areas: around applying for work and the problem of whether or not to disclose epilepsy; around maintaining employment and the p os- sibility of covert dismissal; and around being successful in work. Bishop and Allen (28 ) further explored the basis for such concerns through a survey of 36 af \201 liate organi zations of the US Epilepsy Foundation, among whom the issues most frequently raised by thei r members included whether or not and how best to disclose epilepsy to potential employers, violations against the American with Disabilities Act, dealing with co-workers and supervi sors, the appropriateness or otherwise of particular types of employment, the implications of being in work for possible loss of health bene- \201 ts, fear of having seizures in th e workplace, and worries about impaired work performance. So to what extent at these concer ns on the part of people with epilepsy justi \201 ed? The \201 nding from MESS that people with single or only a few seizures experience greate r employment disadvantage than the general population from the outset of their condition is in line with the previously discussed \201 ndings reported by Jennum et al. (10). That M ESS participants subsequently appear not necessarily to experience worsening employment rat es over time resonates with the study in Sweden reported by Lindsten et al. (18) who also f ound slightly lower rates of employment following the index seizure but no evolving negativ e effects for employment status over a 10-year follow-up period. Evidence of the impact of epilepsy for employability also comes from studies which have fol lowed cohorts of patients with childhood onset epilepsy (32 \200\22334). Jalava et al. (32) reported a sevenfold risk of unemployment for those affected when compared to controls, wi th rates elevated even among those in long-term remission \200\224 suggesting substantial early and sustained disadvantage. In contrast, Wakamoto et al. (34) reported that though ov erall employment rates were lower for the group of individuals with epilepsy com- pared to their controls (67 % compared to 97 % ), rates were near Evidence about rates of employment, unemployment, and underemployment Several studies have reported that rates of employment are lower and, conversely, that rates of unemployment are higher in people with epilepsy than in their comparator populations (Fig. 34.1 ). Thus, fo r example, unemployment risk was roughly doubled for men and trebled for women with epileps y in a UK community study (21); and was approximately \201 ve times that of the general U S population in the study by Fisher et al. (29) \200\224 though in contrast, in a study co nducted in Sweden, Chaplin et al. (14) reported that unemployment rates among people with e pilepsy were little differ- ent to those of the population as a whole, suggesting important effects of sociocultural context. However, studies which treat people with epilepsy as an undifferentiated group are misleading in as much as they fail to recognize that some people with epilepsy are at more risk than others. For example, Jacoby (13) examined employment r ates in people with well-controlled epilepsy and found them to be similar to those of the g eneral UK population; as did Ratsepp et al. (15) and Herodes et al. (30) in studies in Esto nia, and Marinas et al. (16) in a study in Spain. However, in all these studies, those with continuing active epilepsy or poorly controlled seizures were, as might be expected, least likely to be employed. 45 PWE 40 Controls 35 30 25 20 15 10 5 The UK MESS (Multicentre Study of Early Epilepsy and Single Seizures) Study followed a coho rt of individuals who had experi- enced only a single or a few seizures over a period of 4 years, to assess the impacts on employment status speci \201 cally (19) and qual- ity of l ife more broadly (31). In those cohort members who were of working age throughout follow-up , employment rates were compared with those in the general population (19) and found to 0 Ir ela E E st o U U U u r o S 1 K 1 K 1 n nia 1 9 p 9 9 d 1 9 e 1 9 8 6 ( 3 ( 7 ( 9 9 9 2 9 2 6 9 9 9 ) 0 ( 1 ) 5 ) 6 ( 8 ( 6 5 3 6 ) 6 ) 0 ) Fig. 34.1 Reported rates of unemployment of people with epilepsy (PWE). CHAPTER 34 epilepsy and employment 351 Table 34.1 Employment trajectories between baseline and 4-year follow-up by occupational so cial class: men and women of working age at all time points Percentages in each social class Professional and managerial Lower non-manual Skilled manual Semi- and unskilled manual Always employed during study 73.7 45.7 63.6 49.1 Never employed during study 7.9 17.1 18.2 14.6 Lost job after entry to study 7.9 22.9 9.1 12.7 Became employed after entry to study 10.5 14.3 9.1 23.6 Total 100.0 100.0 100.0 100.0 Table restricted to people with single seizures or early epilepsy who responded at all time points and supplied complete data on employment status and occupational social class. Repr oduced from Holland et al. (19). Epilepsy has a long history of associated stigma (38) which has included propositions about a link between the epileptic condition and insanity, violence, degeneracy, and inherent we aknesses of character (39). The extent to which such ideas impact on issues of employabilit y is not necessarily easily observable, but there is none- theless a signi \201 cant body of evidence that both employers and co-workers not infrequently hold less positive attitude s than are helpful to people with epilepsy. Though the cohort studies in the US by Hicks an d Hicks (40) suggest signi \201 cant improvement over time in the attitudes of employers t owards epilepsy, their \201 ndings are challenged by others highlighting continuing mispe rceptions and negative attitudes. For example, Hicks and Hicks reported that in 1986, all e mployers they interviewed said there were jobs in their organization \201 llable by peopl e with epilepsy; whereas the propor- tion agreeing that this was the case was only two-thir ds in a study of employers in rural areas of the US conducted at around the same time (41). Likewise, Hicks and Hicks (40) reported that 95 % of their 1986 cohort of employers had kn owingly employed someone with epilepsy, whereas in the study by Gade and Toutges (41), only 45 % had done so. In a recent study in the UK (42), 84 % of employ- ers questioned said th ere were jobs in their organization \201 llable by people with epilepsy, but only 26 % ha d knowingly employed someone with epilepsy. In the same study, a \201 fth of participatin g employers thought epilepsy in a prospective employee would present a major issue; and 44 % thought it would cause high con- cern generally (Fig. 34.3 ) and in relation to possible absenteeism and workplace accidents (despite the lack of any substantial evi- dence to supp ort these concerns). Perhaps for these reasons, 76 % thought people with epilepsy should al ways disclose their condition to prospective employers, even when they had been seizure-fre e for 2 years or more. equal where the people with epilepsy were classi \201 ed as \200\230of normal intelligenc e \200\231. Other evidence of disadvantage comes from studies by Trostle (35) in the US and Jacoby et a l. (21) in the UK, both of whom reported that the proportion of people with epilepsy in man agerial and non-manual positions was signi \201 cantly lower than in their comparator popu lations; and Wadsworth (36), also in the UK, who reported that people whose epilepsy was \200\230uncomplicated \200\231 were nonetheless at increased risk of earning less and of ex periencing reduced work opportunities than people without epilepsy. Factors in \202 uencing employability of people with epilepsy Craig and Oxley (37) present a four-dimensional framework of factors associated with the employment problems of people with epilepsy (Fig. 34.2 ). This framework suggests that both overt and covert factors and both intrinsic and extrinsic factors need to be considered. Among \200\230extrinsic \200 \231 factors can be included the legal and statutory restrictions placed upon people with e pilepsy; the lack of understanding and resultant discriminatory attitudes of employers and of fellow employees; and the low expectations for their achieve- ment among the families an d carers of people with epilepsy. Important \200\230intrinsic \200\231 factors could be in adequate seizure control, impaired cognitive functioning; poor self-image, and negative bel iefs held by people with epilepsy in relation to their employabil- ity. Subsequent research has attempted to explore empirically the contribution these different sets of factors make to the employment dif \201 culties faced by people with epilepsy. Two interesting experiments around the issue of epilepsy and employment have been reported recently. In the \201 rst, Bishop et al. (43) set out to examine the differential effect of three different \200\230epi- lepsy labels \200\231 on employer perceptions. The labels under investiga- tion were \200\230epilepsy \200\231, \200\230seizure disorder \200\231, and \200\230seizure condition \200\231 \200\224 and their relative impact was assessed by asking the research partici- pants (employers) to rank-order the likelihood of hiring a pe rson with each of these \200\230conditions \200\231 for either an assembly line position o r a customer service representative position. Contrary to their expectations, the authors r eport that that \200\230epilepsy \200\231 was more favorably judged than were the terms \200\230seizure disorder \200\231 or \200\230seizure condition \200\231, perhaps, they sug gest, because employers are clearer Covert Extrinsic (eg. attitudes of employers, co-workers, low expectations of significant o thers) Covert Intrinsic (eg. fear of discrimination, impaired self-image, low expectations, PWE be liefs re. work) Overt extrinsic (eg. statutory limitations re. employment, driving regulations) Overt Intrinsic (eg. Inadequate Sz control, cognitive impairment, low educational achieveme nt) Fig. 34.2 A framework for factors associated with employability problems of people with epi lepsy (PWE). Adapted from Craig and Oxley (37). oxford textbook of epilepsy and epileptic seizures 352 possibility of having to give \201 rst-aid to a co-worker with epilepsy. Harden concludes that epilepsy carries a higher risk of social avoid- ance than its comparator conditions o f ill-health, requiring educa- tion of the public on how to manage seizures. In a UK survey (46), people with epilepsy were found to represent the second most cited health condition, after depression, as causing concern to potential co-workers. 80 High overall concern 70 High concern re. absenteeism 60 High concern re. accidents 50 Turning to people with epilepsy themselves, their own beliefs have also been shown to be a critical factor for their employment status (47), including beliefs about the meaning of wo rk, concerns about safety and perceptions of workplace-related risk, and antici- pation of the negative impact of seizures on work performance. In this study, informants completed a 20-item \200\230work beliefs \200\231 measure, scores for which were higher \200\224 in o ther words, more negative \200\224 for speci \201 c \200\230beliefs \200\231 items among those who were not in work (Table 34.2 ). Such negative connotations about their condition can be seen as another manifestation of \200\230felt \200\231 stigma (48) among people wi th epilepsy, which Scambler (49) suggests may be more perva- sive for quality of life than any \200\230enacted \200\231 stigma or discrimination. Support for this proposition comes from the study by Jacoby (50), which found that whereas only 3 % of people with epilepsy re ported failing to get a job because of their epilepsy and only 2 % could recall being treat ed unfairly at work because of it, around a third considered that having epilepsy made it m ore dif \201 cult for them than for others to secure employment. 40 30 20 10 0 S tr e F E H a W pile e cial disfig h a rt a tt a ss/ e elc p s y d h e air u p r e c k u r e ssio s e r m n e n t Fig. 34.3 UK employers \200\231 concerns about employing persons with health conditions. Ja coby et al. (42). about its meaning. Whatever the reasons for this (and they undoubtedly deserve further inve stigation), the study con \201 rms its authors \200\231 original hypothesis that the label used to discuss epilepsy may have a signi \201 cant effect on employer perceptions. In an analysis of internal factors in \202 uencing employability of people with epilepsy ( 51), being of younger age, Caucasian, with higher educational and household income levels, taking fewer antiepileptic drugs, having no other comorbidities and not being on disability bene \201 ts, having previous work experience and seeing work as personally important, an d being less concerned about possible workplace discrimination were all signi \201 cant pr edictive factors. Some of these predictor factors are almost certainly not speci \201 c to the employability of people with epilepsy and re \202 ective of other forms of discrimina tion. In a multiple regression analysis, those which emerged as highly signi \201 cant for people with epilepsy were belonging to a higher household income group, the perceived impo rtance of work personally and being less concerned about possible workplace discriminations . Interestingly, clinical epilepsy In the second study, Parfene and colleagues (44) set out to inves- tigate whether indirect association with epilepsy acts as a source of stigma in relation to employability, by exami ning workplace out- comes for hypothetical employees who did not have epilepsy them- selves , but were potentially subject to stigma by association. Enlisted research participants (co llege enrollers) were asked to assess the likely quality of an employee \200\231s work and their own likelihood, if employing that person, of recommending them for workplace rewards or penalties, based on six different randomly allocated employee scenarios. These scenarios were identical except that the putative employee was either male or female and had either taken leave in the past year to care for a child with epilepsy or asthma or not taken any l eave. Their analysis found a signi \201 cant effect of leave condition, which in turn was associated with an appreciable (though non-signi \201 cant) effect on work quality evalu- ations and a signi \201 cant effect on the likelihood of work rewards and penalties \200 \224 in summary, the research revealed biases against employees who took leave to care for a child with epilepsy, but not employees whose child had asthma. Their \201 ndings sugges t some process of \200\230contamination \200\231 by association and a situation of indi- r ect discrimination and disadvantage. Table 34.2 Beliefs of people with epilepsy about their employability Work belief item Not in work (mean score a ) In work (mean score) P value You have to work to be normal 2.05 3.02 0.004 I don \200\231t have enough education to work 2.73 1.48 0.0001 Parallel work to that involving the attitudes of employers has explored the attitudes of co -workers and supports this negative message. Harden and colleagues (45) presented a series of vignettes to US employees relating to having a co-worker with epilepsy or depression or multiple sclerosis. They found that epilepsy was least known about (perhaps because it was least disclosed by those with the condition); that employees expressed greater anxiety abou t interacting with a co-worker with epilepsy than one with either of the other two conditio ns; and expressed more anxiety about pos- sible unpredictable behaviors on the part of a co -worker with epilepsy. They also expressed a lower level of comfort about the My family fears work injuries 3.57 1.75 0.01 I fear work injuries 2.75 1.81 0.0001 I might injure others if I have a seizure at work 3.01 2.05 0.003 Family does not want me to work 2.76 1.29 0.002 My seizures would affect my work performance 3.50 2.37 0.0001 a Higher scores indicate more negative responses Adapted from Clarke et al. (47). CHAPTER 34 epilepsy and employment 353 variables did not emerge as important in this analysis \200\224 in particu- lar, seizure c ontrol did not emerge as a primary determinant of employability. concern about the productivity of employees with disabilities and chronic health conditions such as epilepsy, while at the same time being reluctant to meet the costs of now legally required job accom- modations for such employees. Also somewhat worryingly, increases in th e number of enquiries from people with epilepsy to the UK charity, Epilepsy Action, about t he employment protection afforded by the UK DDA have been matched by a decline in those com ing from employers (61). There is a brighter side to this somewhat bleak picture. It has been reported that employme nt rates in epilepsy are higher than for other disabilities (52); and, as highlighted earli er in this chap- ter, are near those in normal populations for people with well- controlled epilepsy (13 \200\22315, 18, 53). There is little evidence of any downward social drift fo llowing a diagnosis of epilepsy in adult- hood (19, 49); and there is evidence of employmen t success among successful surgery patients (54, 55). Current evidence also suggests that t here is little increase in risk of work absences or accidents in people with epilepsy whose seizures are satisfactorily controlled compared to the general working population. In the RESt-1 Study (56, 57), a prospective cohort study across eight countries in Europe involvin g around 600 people with epilepsy and matched controls, 22 people with epilepsy and nine wi thout reported 30 and 12 accidents in the workplace, all but one of which were mild and did not require hospitalization. Though, based on these data, people with epilepsy were at rou ghly double the risk for work- related accidents, their accidents were minor and unrelated to sei- zure events; and people with epilepsy emerged as at only very slightly greater risk of having time off work. These \201 ndings support those of earlier studies such as the one by Dasgupta et al. (58) which found no evidence of increased rates of work absenteeism or work- related accidents among people with epilepsy; and by Wiebe et al. (59) who showed that though people with epilepsy reported more \200\230disability days \200\231, they had no higher risk of accidents than their non-epilepsy comparators. On a more positive note, evidence of the potential for success of employment initiatives fo r people with epilepsy has recently been reviewed by Varekamp et al. (64). These authors id enti \201 ed nine studies \200\224 though none were in epilepsy \200\224 of vocational r ehabilita- tion interventions that met speci \201 ed inclusion criteria. Employment status of the discriminated group was improved in four of \201 ve studies where this was the as sessed outcome; obtaining work accommodations was achieved in three of three studies; and i mproved psychological status of the discriminated group was achieved in two of three studie s. There were some methodological weaknesses in the studies described, but nonetheless ther e was also some evidence of the effectiveness of the documented interven- tions. Work integ ration initiatives such as the one described by de Boer (1), that bring together government agencies, vocational con- sultants and people with epilepsy, offer a promising way forward ; though more evidence of their success is needed to convince governments to invest meaning fully in them. Improving employability of people with epilepsy Given all this evidence of the continuing, if slowly lessening, employment dif \201 culties encountered by people with epilepsy, ther e are some important lessons to be learned from stigma research more broadly. First, as the empirical work reported highlights, stigma research reinforces that it is important to foc us both on the targets of stigma, and on its perpetrators, the former in this instance peop le with epilepsy, the latter employers and co-workers. Second, stigma is a multilevel pheno menon \200\224 and stigma reduction initia- tives, including those targeted at employabili ty, need to be directed from the intrapersonal through to the social structural level. Thir d, stigma research shows that multistrategy initiatives are most effective \200\224 educat ional approaches alone are insuf \201 cient and need to be backed by other approaches such as contact between stigma- tized and non-stigmatized groups; and supported by statute. There is also some evidence of improvements in employers \200\231 atti- tudes towards epile psy. In a study conducted in 1972, Sands and Zalkind (60) reported that following an intens ive educational campaign in the US, there was no discernible change in employers \200\231 a ttitudes to employing people with epilepsy or to the possible employment related activities of people with epilepsy; nor did employers expect to change their views. In contrast, Jaco by et al. (42) found that among UK employers questioned three decades on, the majority were willing to consider possible accommodations to conditions of work for any employees with e pilepsy, including job sharing (78 % ), \202 exible working hours (72 % ), additional res t breaks (59 % ), physical modi \201 cations to the work space (54 % ), and alternative tr ansportation arrangements (45 % ). To some extent, such apparent willingness to make accomm odations has almost cer- tainly been driven by the requirements of current UK employment la w, highlighting that stigma/discrimination reduction may best be attained by educational in itiatives supported by statute; neither approach is, of itself, likely to be suf \201 cien t. However, measuring the real impact of legislation in protecting the employment status of people with epilepsy is dif \201 cult and the \201 ndings not always encouraging (61). For example, in a recent study by the UK Department for Work and Pensions (62), 43 % of emp loyers cited the UK Disability Discrimination Act (DDA) as a driver for making employment-r elated adjustments for disabled employees; but there was a decline over the previous 3-year period in the percentage actually having done so; and there was a parallel decline across the same time period in the proportion of employers reporting employ- ing anyone with a dis ability. In an examination of the impact of the Americans with Disabilities Act, Roessler a nd Sumner (63) reported evidence of a \200\230catch 22 \200\231 situation arising, with em ployers expressing Additionally, the tendency demonstrated in studies such as those cited to consider people w ith epilepsy as a single, homogeneous group, needs to be challenged. Not all people with ep ilepsy encoun- ter problems with employment, and employment initiatives need to target the dif \201 cult-to-employ. The evidence suggests these are most likely to be: those with unc ontrolled seizures, those with additional handicaps; those with comorbidities such as depre ssion; those from lower socioeconomic groups; those with epilepsy devel- oping in childhood ; and those with none of these problems, but fearful of workplace discrimination. The appro aches taken and degree of support required will vary depending on which of these groups is being targeted. So, what can be done to assist people with epilepsy in need to minimize the dif \201 culti es they face in the context of employment? The evidence reported here suggests the problem