Factors Associated with Work Outcome After Anterior Temporal Lobectomy for Intractable Epilepsy

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1 Epilepsia, 38(6): , 1997 Lippincott-Raven Publishers, Philadelphia 0 International League Against Epilepsy Factors Associated with Work Outcome After Anterior Temporal Lobectomy for Intractable Epilepsy A. L. Reeves, E. L. So, *R. W. Evans, G. D. Cascino, F. W. Sharbrough, *P. C. O Brien, and?max R. Trenerry Division of Epilepsy, Department of Neurology, *Department of Health Sciences Research, and?section of Neuropsychology, Mayo Clinic, Rochester, Minnesota, U.S.A. Summary: Purpose: Whereas the effect of anterior temporal lobectomy on seizure frequency is well recognized, less is known about its impact on work status. Methods: One hundred thirty-four of 190 consecutive patients with temporal lobectomy participated in this study. Eligibility criteria were developed to ensure that only patients with the potential of achieving specific outcomes were included in the corresponding analyses. Results: After surgery, significantly more patients were independent in activities of daily living (p < 0.001) or able to drive (p < 0.001). Income from work also increased (p < 0.01). Nearly one fifth of the patients who were eligible for analysis had either a gain (8%) or a loss (1 1%) of full- or of part-time work. Univariate analyses revealed the following factors to be associated with full-time work after surgery: student or fulltime work within a year before surgery, full-time work expe- rience before surgery, full- or part-time employment experience before surgery, no disability benefits before surgery, low postsurgical seizure frequency, improved postsurgical seizure control, excellent postsurgical seizure control, driving after surgery, and further education after surgery (p < 0.05). Significant factors on multivariate analysis were being a student or having full-time work within a year before surgery [odds ratio, 16.2 (95% CI, )], driving after surgery [ 15.2 ( )], and obtaining further education after surgery [9.2 ( )]. Conclusions: Anterior temporal lobectomy for intractable epilepsy improves activities of daily living and the ability to drive. Work outcome of this surgery is influenced by presurgical work experience, successful postsurgical seizure control especially to allow driving, and obtaining further education after surgery. Key Words: Epilepsy-Epileptic seizures- Temporal lobectomy-socioeconomic outcome. The medical profession is increasingly expected to critically appraise the outcome of services it provides (1). Physicians are often enjoined to adhere to practice guidelines that are based on outcome assessments (2). Patients quality of life (3) and the socioeconomic impact of treatment modalities (4) are two measures that are frequently overlooked when assessing outcomes of medical interevention. Epilepsy surgery is a costly procedure that is being performed with increasing frequency for the control of medically intractable epilepsy. From 1986 to 1992, the number of centers in this country performing epilepsy surgery increased from 24 to 70 (5). Within the same period, the number of epilepsy surgeries tripled from -500 to 1,500 per year. Because it is estimated that -100,000 persons may be considered for epilepsy surgery at any one time (6), the number of surgeries will Accepted February 7, Address correspondence and reprint requests to Dr. E. L. So at Department of Neurology, Mayo Clinic, 200 1st Street S.W., Rochester, MN 55905, U.S.A. likely continue to increase. Moreover, the estimated number of patients with new intractable epilepsy is so high that 5,000 patients may potentially be added to the pool of candidates each year. With the cost of each surgery ranging from $30,000 to $50,000 (7), the average direct cost of epilepsy surgery to society is $50-75 million per year. This could conceivably increase in a few years to as much as $300 million per year. It is disturbing to note that past studies have not consistently demonstrated a gain in the number of employed persons after epilepsy surgery is performed (8-12). Of the 51 patients in one study (13), 23 were employed before temporal lobectomy and only 21 afterward. The rate of unemployment in another study was 31% before and 28% after surgery (10). The definition of employment and of unemployment varied considerably among previous series. One study considered students and persons in a sheltered workshop as being employed (10). Others relied on measures undefined (14,15) or subjective (11,16-18) measures (e.g., work ability, capacity, performance, or career outcome. ) 689

2 690 A. L. REEVES ET AL. Heretofore, only five studies (10,14,16,17,19) statistically analyzed their data, and only one (19) demonstrated significant improvement in unemployment rates. Some studies (14,17,19) examined a limited number of factors as predictors of work outcome, but none performed multivariable analysis to identify factors that are independently predictive. To further elucidate the effect of epilepsy surgery on work, study, and activities of daily living, we assessed in detail the status of a cohort of 134 patients before and after anterior temporal lobectomy for intractable epilepsy. We conducted a comprehensive evaluation of presurgical and postsurgical factors to determine their association with work outcome. Multivariate analysis of these factors also was performed to identify those that are independently associated with outcome. METHODS Description of cohort Between January 1, 1988, and June 30, 1991, 190 patients underwent first-time anterior temporal lobectomy with amygdalohippocampectomy at the Mayo Clinic for control of medically intractable complex partial epilepsy. [The protocol for presurgical evaluation was previously described (20)]. Of the 190 patients, three were unavailable for contact. The remaining 187 patients were invited to participate in the study, and 134 (72%) responded. Data collection Patient charts were reviewed to collect information regarding demographics, epilepsy history, neuroimaging and video-eeg results, and postsurgical status. Unless the patients conditions required otherwise, postsurgical follow-up visits were made before hospital discharge, at 1 month, 3 months, 1 year, and each year thereafter. A questionnaire was used to obtain information about presurgical and postsurgical income levels, work and study activities, independence in activities of daily living (ADL), and driving status. The questionnaire was adapted from those developed by one of us (R.W.E.) for the evaluation of the outcome of specific treatment modalities in other chronic illnesses (21). Patients were interviewed by phone if their answers to the questionnaire required verification or completion. The conduct of the study, including the questionnaire, was approved by our Institutional Review Board. Outcome measures Seizure frequency outcome was assessed by a scoring system recently introduced by Engel et al. (Table 1) (22) We previously demonstrated the usefulness of the scoring system in monitoring the postsurgical course of patients in this study (23). The scoring system provides a full range of seizure frequency that minimizes subjective TABLE 1. Scoring system of seizure frequency Seizure frequency Seizure free, not taking antiepileptic drugs Seizure free, need for antiepileptic drugs unknown Seizure free, requires antiepileptic drugs to remain so Nondisabling simple partial seizures Nondisabling nocturnal seizures only 1-3 per year 4-11 per year 1-3 per month 1 4 per week 1-3 per day 4-10 per day >10 per day but not status epilepticus Status epilepticus without barbiturate coma Score I From Surgical treatment of the epilepsies. 2nd ed. New York: Raven Press. 1993: judgment regarding the extent of improvement or worsening in seizure control after surgery. Seizure control was considered excellent in those with scores of 0-4 because they did not have disabling seizures. Seizure control was considered improved if there was a reduction of seizure frequency by 275%. Work activities of the patients were ascertained in detail with specifications of being full-time employed (235 Wweek), part-time employed (<35 Nweek), in sheltered workshop, unemployed, or disabled. Patients were considered disabled only if they were receiving disability benefits. We also identified patients who were homemakers, students, and retirees. Full-time work was defined as working in full-time employment or as homemaker. The measure of income level was specified as that resulting from the patients work activity alone and unadjusted for cost-of-living increases. We determined whether patients perceived themselves as completely independent in all ADLs (e.g., eating, selfgrooming, hygiene). The patients driving status was verified. If they were not driving, they were asked to indicate the reasons so as to avoid attributing nondriving status to epileptic seizures when there were other reasons, such as being underage or not having access to a vehicle. Statistical analysis To assure that there was no bias in recruiting participants in the study, attributes of the 134 participants and the 53 non-participants were compared by using twosided rank-sum and x2 tests. To evaluate the effects of anterior temporal lobectomy, these measures at last follow-up were compared with those during the year before surgery. We used sign tests to determine whether the following changed after surgery: work activities, income levels, independence in ADL, disability benefits, and driving status. Eligibility criteria were developed to ensure that only patients with the potential of achieving the outcome in question were

3 WORK OUTCOME AFTER TEMPORAL LOBECTOMY 691 included in the analyses. For analysis of change in work activities and in income levels patients were required to meet the following two eligibility criteria: (1) 219 years old at surgery, and (2) not students, retirees, or temporarily laid off the year before surgery or at follow-up. For analysis of driving status, 112 were eligible after excluding those who could not drive for reasons other than seizure occurrence. Univariate analyses of factors for association with postsurgical full-time work were performed by x2 or rank-sum tests. Patients included in this analysis were 2-19 years old at the time of surgery and were not students, temporarily laid off, or retired at last follow-up. None of these patients had physical or mental limitations of such severity that would have precluded them from full-time work. The factors evaluated were gender, age at first unprovoked seizure, epilepsy etiology, intelligence quotient, age at surgery, duration of epilepsy history, part-time employment within a year before surgery, fulltime work or student within a year before surgery, parttime employment experience anytime before surgery, full-time employment experience anytime before surgery, either full- or part-time employment experience anytime before surgery, never having received disability benefits, duration of follow-up, independence in ADLs after surgery, postsurgical seizure frequency, improved postsurgical seizure control, excellent postsurgical seizure control, driving after surgery, further education after surgery, and age at last follow-up. Factors that were found to be significant (p < 0.05) were subjected to multivariate analysis by stepwise logistic regression. These factors also were evaluated for correlation with being employed or with studying after surgery in a subgroup of patients who were in neither situation before surgery. RESULTS Comparison between study participants and nonparticipants There was no difference in the demographics, epilepsy history, age and side of surgery, and degree of postsurgical seizure control between those who participated in the study and those who did not (p > 0.05; Table 2). There was also no difference between the two groups in the calendar years when their surgeries were performed (p > 0.05). Because participants completed the study questionnaire after their last clinic visit, whereas nonparticipants did not, mean duration of follow-up was slightly but not significantly longer for participants than for nonparticipants (4.2 vs. 3.5 years; p > 0.05). Activities before surgery Figure 1 shows the distribution of the 134 study patients according to the types of work they were engaged in before surgery. Nearly half were engaged in full-time TABLE 2. Comparison of study participants and nonparticipants Participants Nonparticipants (n = 134) (n = 53) Gender (male %) Mean age at first unprovoked seizure (yr) Symptomatic epilepsy (%) Mean IQ Secondarily generalized seizures (%) Mean presurgical seizure score 8 8 Mean age at surgery (yr) Side of surgery (right %) Mean postsurgical seizure score All p values >0.05. work. Approximately one fifth were neither employed nor in school, and 75% of these individuals were receiving disability benefits. Seizure outcome Average duration of postsurgical follow-up was 4.2 years (range, years). Seizure control at last follow-up was improved in 119 (89%) patients. One hundred seven (80%) had excellent outcome with no disabling seizures. Activities of daily living (ADLs) and driving before and after surgery After surgery, there was a significant increase in the proportion of patients who were independent in ADLs. One hundred eighteen (88%) were independent after surgery, compared with 92 (68%) before surgery (p < 0.001). Of the 134 study patients, 22 were not driving before or after surgery for reasons other than their seizure disorder. Of the remaining 112 patients, the number of those who were driving increased significantly after surgery. Twenty-two (20%) were driving before surgery, whereas 89 (79%) were driving afterward (p < 0.001). Change in work activity and income after surgery Eighty-nine patients were eligible for comparison of work activity before and after anterior temporal lobec- Student 1- u Unemployed 4% Sheltered workshop 2% Part-time employed 12% FIG. 1. Distribution of the 134 study participants according to the types of work activity they were engaged in the year before surgery. Epilepsia. Vol. 38, No. 6, 1997

4 692 A. L. REEVES ET AL. TABLE 3. Numbers qf patients according to categories of work activiv before and after anterior temporal lobectomny" After surgery Before Part-time Sheltered surgery Full-time work employed workshop Unemployed Disabled Total Full-time work 48 Part-time employed 5 Sheltered workshop 0 Unemployed 1 Disabled 2 Total 56 p > 0.05 by sign test. 0 I a Analysis performed on 89 patients who were determined by the following criteria to be eligible for work before and after surgery: (1) 19 years and older at surgery; (2) not students, retirees, or temporarily laid off the year before surgery or at follow-up. tomy. As a group, there was no significant change in the number of patients engaged in each type of work (p > 0.05; Table 3). Nonetheless, full- or part-time work status did change after surgery in 17 (19%) patients. Seven patients gained, whereas 10 patients lost either full-time or part-time work after surgery (8 vs. 11%; p > 0.05). The seven patients who gained work were all seizure free or had auras only after surgery. Five of the 11 patients who stopped working after surgery were receiving disability benefits at last follow-up. Three of the five had persistent seizures, one developed severe depression, and another had no known reason for being considered disabled. Those who were full-time students in the year before surgery did particularly well after surgery. Of the 21 study patients who were full-time students before surgery, 10 (48%) were full-time students after surgery, nine (43%) became employed full-time, one (4.5%) was employed part-time, and one (4.5%) was in a sheltered workshop. Indeed, the largest proportion (47%) of the 19 patients who gained full-time work after surgery were full-time students before surgery. The rest were part-time employed before surgery (26%), unemployed (1 6.5%), and disabled (10.5%). Information concerning income was available in 86 of the 89 patients who were eligible for assessment of presurgical and postsurgical work activity. There was a significant change after surgery in the distribution of patients according to levels of income from work activity (p = 0.002; Fig. 2). The major changes were an increase from eight to 20 patients in the $20,000-$39,999 category and a decrease from 29 to 18 patients in the $10,000-$19,999 category. The changes in these two categories were the result mainly of the ascent of 12 patients from the lower to the higher income level. The number of patients who had no income from work remained unchanged. Factors associated with full-time work after surgery One hundred one patients were eligible for determination of the factors associated with full-time work after surgery. Of the 20 factors evaluated, nine were significantly associated with postsurgical full-time work: being a student or having full-time work within a year before surgery, possessing full-time work experience anytime before surgery, having full- or part-time employment experience anytime before surgery, never having received disability benefits before surgery, low postsurgical seizure frequency scores, improved seizure control after surgery, excellent seizure control after surgery, driving after surgery, and further education after surgery (p < 0.05; Table 4). Multivariate analysis of these nine factors revealed the following to be independently associated with full-time work after surgery: being a student or working full-time within a year before surgery [odds ratio, 16.2 (95% confidence interval, )], driving after surgery [ 15.2 ( )], and obtaining further education after surgery [9.2 ( )]. Factors associated with outcome in those who were neither employed nor studying before surgery Of the 22 patients who were eligible for this evaluation, eight became employed or were studying after surgery. The factors listed in Table 4 also were evaluated in these patients. No factor was found to be significantly associated with postsurgical employment or with studying after surgery (p > 0.05). DISCUSSION A comprehensive evaluation of both presurgical and postsurgical factors for association with work status after c Ip m.m-39, ,999 < 10,oOo No income H Presurgical inmme B Postsurgical income 0 10 Patients (no.) FIG. 2. Comparison of the presurgical and postsurgical distributions of patients according to levels of income from work activity (p = 0.002, sign test). 29

5 WORK OUTCOME AFTER TEMPORAL LOBECTOMY 693 TABLE 4. Differences between 62 patients with and 39 patients without full-time work after anterior temporal lobectomy" Full-time work Factors Yes No pvalue Male gender Age at first unprovoked seizure (yr) Symptomatic origin of epilepsy Intelligence quotient (n = 93) Age at surgery (yr) Duration of epilepsy history (yr) Part-time employment within a year before surgery Full-time work or student within a year before surgery Part-time employment anytime before surgery Full-time employment anytime before surgery Any employment anytime before surgeryb No disability benefits anytime before surgery Duration of follow-up (yr) Postsurgical seizure frequency score' Improved seizure control after surgeryd Excellent seizure control after surgery' Independence in ADLs after surgery Driving after surgery (n = 93) Further education after surgery Age at last follow-up (yr) 40% % % 84% 21% 81% 98% 87% % 90% 68% 93 % 21% % % % 28% 33% 54% 79% 44% % 67% 65% 53% 7% < < < <0.001 < Patients eligible for these analyses were 19 years or older at the time of surgery, and were not students, temporarily laid off, or retired at last follow-up. Total n = 101, unless otherwise indicated when data are unavailable in some patients. Either full- or part-time employment experience. See Table 1 for seizure-frequency scoring system. 75% or greater reduction in seizure frequency. No seizures or only nondisabling seizures (i.e., seizure frequency score of 0 to 4). ADLs, activities of daily living. temporal lobectomy has not been previously reported. Despite our observation that there was no significant change in the work status of our patients as a group, -20% had either a gain or a loss of full- or of part-time work. This magnitude of change in either direction enabled us to identify factors that were associated with a favorable work outcome after anterior temporal lobectomy. Similar to a few other reports (9,10,16,19), we found by univariate analyses that enhancement of seizure control by surgery was favorable for retaining or gaining full-time work after surgery. However, multivariate analysis failed to identify postsurgical seizure control to be independently predictive. It is probable that, in our multivariate model, the ability to drive after surgery represents the best degree of seizure control. In most states, acquiring a license for driving requires seizures to be continuously controlled for a period of 6 months to a year. Sperling et al. (19) observed that patients who had the best postsurgical seizure control also had the greatest improvement in employment status. Thus the effect of driving in our model of multivariate analysis very likely exceeds the effects exerted by other measures of seizure frequency or reduction. The importance of postsurgical seizure control in determining work outcome is further supported by a previous report (12) of decline in work status when surgery failed to improve seizure control. Our study also underscores the relation between education and the work outcome of patients who underwent anterior temporal lobectomy for intractable epilepsy. Further education after surgery was independently associated with achieving full-time work. The benefits of surgery were very prominent in those who were students within a year before surgery. Of these students, 91% either became full-time employed or continued as fulltime students after surgery. Nearly half of the patients who achieved full-time work were full-time students when surgery was performed. Work experience before surgery emerged from our analyses as an independent predictor of postsurgical work outcome. Although this finding is intuitively expected, only one other study (10) investigated the issue and found that the duration of presurgical unemployment was longer in patients who were unemployed than in those who were employed after surgery. Our patients who had a history of receiving disability benefits before surgery were significantly less likely to have full-time work after surgery. More patients perceived themselves as being fully independent in their ADLs after anterior temporal lobectomy for intractable epilepsy. Personal independence apparently can improve very soon after surgery. Using scales of psychosocial ratings, Rausch and Crandall(l7) observed an improvement in self-independence within a year of surgery. However, Fraser et al. (24) noted that although surgery improved patients' performance of their ADLs, it did not increase the number of patients living independently at 1-4 years after surgery. The mean duration of follow-up of their patients is unknown. It is probable that many patients need a longer period after surgery to become financially capable of living independently. The ability to achieve this outcome is also expected to be dependent on the patients' psychosocial and neuropsychological functions before surgery. The preliminary reports (13,24) do not describe the role of these factors. Anterior temporal lobectomy also enables most patients to drive, whereas uncontrolled seizures prevent them from doing so before surgery. Nearly 80% of our patients who were eligible by age and had the means to drive were driving after surgery, whereas only 20% were driving before surgery. Eighteen of the 31 consecutive patients we surveyed in the past cited driving as a major reason for selecting anterior temporal lobectomy as a treatment for their intractable epilepsy. Williams et al. (18) also found that driving was a major goal of their patients in considering temporal lobectomy. Of their patients, 65% were driving at an average of 3.5 years after

6 694 A. L. REEVES ET AL. surgery. The higher rate observed in our study may be the result of our exclusion from analysis of patients who were not driving for reasons other than seizure disorder. The number of our patients in each work category did not change substantially after anterior temporal lobectomy because the number of those who improved in work status were offset by the number of those who declined. Augustine et al. (10) also observed a bidirectional change in their patients. On the other hand, unemployment rate among the patients of Sperling et al. did decrease after surgery (19). Both their study and ours limited analysis to patients who were eligible for the work force. Nonetheless, the dissimilar outcomes of the two studies may be caused by differences in patient populations. In our study, 80% of those were not working before surgery were receiving disability benefits. These patients were less amenable to occupational gains or recovery. We have shown that patients who had received disability benefits anytime before surgery were less likely to have full-time work after surgery. Their vocational skills may have been more severely compromised than were the skills of those who were unemployed but not certified as disabled. Furthermore, benefit payments may have served as a disincentive to work (9). At the other end of the spectrum were 64% of our patients who were working full-time when surgery was performed. These patients were already in the best category of work status before surgery; their work status could only remain unchanged or deteriorate after surgery. Only 18% of our patients (i.e., 10 part-time employed, two in sheltered workshop, four unemployed) were free of the constraints that limited patients at the extremes of the spectrum from improving their postsurgical work outcome. In contrast, the unemployed in the study of Sperling et al. included patients in sheltered workshop (personal communication). Their study did not determine the patients history or status of disability benefits. Another possible explanation for the discrepancy in the outcome of the two studies is the shorter postsurgical follow-up of our patients compared with theirs ( vs years). Many of the unemployed patients of Sperling et al. took up to 6 years to obtain employment. Likewise, behavioral abnormalities may not improve until long after seizures are controlled by surgery (25,26). Although income from work of our patients increased after temporal lobectomy, we do not know how much of the improvement was the result of cost-of-living or length-of-tenure adjustments. To obtain that information, a more detailed study specifically focused on this issue is needed to track the ongoing changes in the patients work and income status. The most ideal study design is comparing surgical candidates randomized to surgery with those randomized to have no surgery. However, the acceptance of temporal lobectomy as an established treatment of intractable epilepsy prevents the use of com- parable patients as nonsurgical controls. Future studies also should consider a comprehensive assessment of neuropsychological factors. A beneficial effect of anterior temporal lobectomy that is not readily appreciable is the prevention of loss of work. Many of our patients are prompted to consider epilepsy surgery by the concern that uncontrolled seizures are jeopardizing their ability to hold a job. Their concern is warranted by reports (12,24) of deterioration of work status in patients whose seizures remain uncontrolled. The unemployment rate in patients with epilepsy is already 6 times higher than that in the general population (27). It most likely is worse in patients with intractable epilepsy. Moreover, we have shown that the likelihood of working full-time after surgery is better if surgery is performed when patients are still working. The majority of our patients had full-time work either before or after surgery or both. The overall outcome of our patients can be considered to be very favorable because work outcome in the majority did not deteriorate and 64% were in the best work category after surgery. The results of our study argue for timely consideration of anterior temporal lobectomy in appropriate patients before their ability to work or to study is compromised by uncontrolled seizures (28). Becoming disabled anytime before surgery unfavorably affects work outcome. As for those who are already unemployed, the chance of becoming employed after surgery is better when surgery is performed at a younger age (19). Postsurgical employment may elude many patients. Further education (12) or job training (13) may be necessary to optimize opportunities for employment. Acknowledgment: We thank Tischa Agnessi, M.S., for her invaluable assistance in data analysis. REFERENCES 1. Schroeder S. 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