Dodrill et al.¹³ reviewed 17 studies on the psychosocial impact of epilepsy surgery. This review was limited to studies presenting actual data regarding changes in six major areas of functioning, including interpersonal relationships, vocational adjustment, capacity for independent living, impact of seizures on everyday functioning, personal adjustment, and overall psychosocial functioning. It is of interest that psychosocial changes are most commonly evaluated by professional ratings; in only a few instances were standardized tests to assess psychosocial adjustment utilized. Positive changes, however, were found both in the studies that used ratings and in those that used inventories.

Findings from these studies suggest that improvement in interpersonal relationships was noted about two thirds of the time. Changes in vocational functioning were examined more specifically than any other area, and it was noted that employment status generally improved. These positive vocational changes, however, tended to be reported only for patients who were seizure free or nearly seizure free. Individuals with major psychiatric or cognitive problems or who were chronically unemployed seldom made the transition to full-time employment. The criteria in these studies were not often stringent, did not always relate to paid employment, and sometimes included ratings of such items as positive employability and productive work activity in the home. In one investigation, 43 of 60 patients gained partial or full economic self-sufficiency who had had neither before surgery.²⁰

The perceived impact of surgery has not been frequently reported in the literature, but in those studies in which it has been addressed, the typical patient has experienced a significant decrease in seizures. Impact on personal adjustment is more difficult to assess; part of the problem is that it has been examined in only a few studies with varying periods of follow-up and has been evaluated from various perspectives (e.g., sexual functioning, personal initiative, and self-image). A final perspective from the review by Dodrill et al. is on changes relative to an index of overall adjustment. Most patients seem to improve psychosexually in these studies, approximately 50% according to an overall index of adjustment. In a decided majority of cases, psychosocial improvement was linked to seizure relief.

More recent studies, not included in the review of Dodrill et al., have also examined aspects of psychosocial functioning. A study by the Montreal group³⁷ clearly shows positive changes in psychosocial functioning on the Washington Psychosocial Seizure Inventory at 1 year for 15 patients who gained complete relief from seizures; no appreciable positive changes occurred in 15 patients who did not gain complete relief, and on six of eight scales they actually showed a modest increase in problem scores. The importance of seizure relief relative to psychosocial gains is therefore underscored. This is especially the case if there are no accompanying interventions that might maximize the benefits of limited seizure relief.

At the Japanese National Epilepsy Center, Mihara et al.³⁵ developed a quality-of-life questionnaire with forms designed separately for surgical patients and their families. The questionnaire assessed the following quality-of-life domains: Seizures, role activities, social relationships, leisure activities, emotional well-being, physical well-being, financial status, and memory problems. All patients were followed for up to 2 years after surgery. Patients and their families rated overall quality of life as having markedly improved following surgery. However, the domains of financial status, role activities, and social and family relationships improved relatively little. These areas, including financial status, which subsumed vocational functioning, appear to be more resistant to change. The study underscores the importance of early intervention in order to have an impact on needs and life satisfaction. It is of interest that individual concerns, such as emotional well-being, tend to be affected by the operation, whereas others that are more environmentally determined (e.g., financial functioning or social relationships) are more resistant to change. This type of finding emphasizes the need for targeted psychosocial or rehabilitation intervention of an “ecologic” nature—assisting individuals to deal with the external world through systematic and interactional changes.

Spencer et al.³⁹ undertook a more sequenced review of quality of life (Quality of Life in Epilepsy [QOLIE]-89) and depression and anxiety (Beck Inventories) at 3, 12, and 24 months from surgery with a large multisite study involving 355 patients. At 3 months, all patients seemed to show significant improvement on quality of life (QOL) and decreased depression
and anxiety. Over time, however, only the seizure-free group showed significantly better QOL with reduced anxiety and depression, evincing a nonsignificant trend in the seizure-free versus the continuing seizure group. These authors concluded that 2 years may be an insufficient follow-up period to determine not only seizure outcome, but also concomitant QOL and psychiatric outcomes.

Gilliam et al.¹⁸ compared the psychosocial status of 125 patients who had received an anterior temporal lobectomy for epilepsy 1 year postsurgery to a group of 71 patients awaiting the operation. Patients who had undergone the operation showed significantly less concern on living with epilepsy on 16 of 20 items of the Epilepsy Foundation of America (EFA) Concerns Index and 8 of 11 scales of the Epilepsy Surgery Inventory (ESI)-55 assessing quality of life. It is of interest that on the regression analysis, mood status, employment, driving, and antiepileptic drug cessation were all predictive of better quality of life, while IQ and seizure-free status were not. The authors cautioned that the controls were still receiving intensive attention and that future prospective, controlled studies are needed involving both surgical and psychosocial intervention. Another study by Aydemir et al.¹ involving a postsurgery versus a presurgery group comparison indicated that QOL was significantly better at a mean of 27 months postsurgery. Continuing seizures, comorbidity, and continuance of antiepileptic medication all negatively impacted QOL.

Findings related to employment outcome following temporal lobe resection deserve special attention. In several studies,^16,17 it appeared that on the whole unemployment rates did not change after temporal lobe resection, although underemployment may be decreased. A study by Guldvog et al.²³ revealed the same findings. Williams et al.,⁴⁶ however, reported that overall employment increased after epilepsy surgery from 42% to 62%. These findings may be confounded, however, by the inclusion of students and homemakers in the employed outcome category. There is a consistent trend throughout this literature, however, of individuals with better seizure outcomes correspondingly adapting more easily to the employment market.

Sperling et al.⁴⁰ evaluated employment following temporal lobe resection in 86 patients 3.5 to 8 years after surgery. Seventy-three patients qualified for the workforce before and after surgery. Unemployment rates declined after surgery from 25% to 11%. Underemployment was also reduced. Seizure-free status was related to improved employability (e.g., seizure-free patients did better than individuals with only some seizure-free years). Age at surgery also influenced vocational outcome, with older patients (above age 40) doing more poorly than young adults. It is also of note that employment gains came slowly, with some patients taking up to 6 years to obtain work. Individuals who were students at the time of surgery, however, tended to do quite well in regard to employment. This is one of the more detailed analyses of employment outcome that has been attempted. Although a few homemakers were included in the employed categories, the numbers would not significantly affect findings.

A more recent study by Jones et al.²⁴ followed 61 patients who had anterior temporal lobectomies versus 23 patients not undergoing the surgery and serving as a medical comparison group. Mean follow-up was approximately 6 years from the surgery. The surgical group had almost double the employment rate (69% vs. 39%) of the medical comparison group. Of more importance was the fact that the surgical group was experiencing gains in amount of hours worked and financial independence when compared to the nonsurgical group, which seemed to be “losing ground.” There is, however, some doubt concerning the comparability of neuropsychological abilities between study and control groups, as controls were mostly persons for whom surgery was not possible.

A number of other studies focus on psychiatric outcomes. To date, findings appear to be relatively consistent, in that some type of postoperative psychosis develops in <10% of cases,³⁰ but depression and anxiety occur more often. Both of these disorders appear to be chiefly transient in nature. Fenwick¹⁵ described depression as occurring in as many as 25% of operated patients and being more transient in nature than anxiety disorders, which tend to persist.²⁶ It would make sense, however, that anxiety could be persistent, particularly if individuals are adjusting to a new seizure-free status and concomitant responsibilities for employment, independent living, and social activity. Williams et al.⁴⁶ indicated that there appears be a correlation between some symptoms of emotional distress on the Minnesota Multiphasic Personality Inventory (MMPI) (elevated False and hypomania scales) and improved vocational outcome. They hypothesized that these elevated scales indicate frustration that may be channeled into later positive psychosocial outcomes.

In terms of predicting depression, Derry et al.¹² indicated that the Washington Psychosocial Seizure Inventory (WPSI) Emotional Adjustment Scale was a better predictor of postoperative adjustment than the Center for Epidemiological Studies Depression and other WPSI scales. Glosser et al.¹⁹ indicated that the onset of new psychiatric problems in the months directly following epilepsy surgery may be as high as 31%. At 6 months postsurgery, the severity of these concerns is much lower than preoperation. The Glosser group described patient reaction as a complex symptom entity, involving mixed features of anxiety, depression, and irritability that cycle around the operation.

Most patients continue to be satisfied with the impact of surgical intervention on their psychosocial functioning—approximately 75%, according to Guldvog.²² Some individuals report satisfaction even if they remain unemployed. Persons undergoing surgery before the age of 30 or as students tend to have significantly better outcomes, particularly vocationally. Patients with poorer cognitive functioning, impairing neuropsychological deficits—specifically of memory—and severe preoperative or postoperative psychiatric conditions can do less well. Koch-Stoecker²⁸ indicated a strong relationship between freedom from seizure involvement and lack of an axis I or axis II disorder (89%), while only 43% of those with a consistent axis I or axis II disorder reached seizure-free status. As pointed out by Mihara et al.,³⁵ changes that are more environmentally determined, which would include both employment and family interactions, may be more difficult or resistant to change. Work by Derry et al.¹⁰ suggests the value of assessing the relationship between learned resourcefulness and internal locus of control relative to psychosocial outcome. These authors found that patients who tend to make internally oriented attributions to seizure control (i.e., a significant attribution to personal behaviors) enjoyed more a positive adjustment to their environment.

As reviewed by Dasheiff et al.,⁹ the quality of life and functional capacities of patients is not uniformly good after epilepsy surgery. Batzel and Fraser³ suggested that some of the difficulties relate to the ratings on life satisfaction scales, which because of scale stability require that interventions yield enormous impact to show useful outcome (“a whopper effect”), and also to basic difficulties entailed in using scale ratings. These become particularly problematic when patients and controls rate themselves as high in satisfaction through naiveté, cognitive impairment, or other psychiatric difficulties, or rate themselves as inordinately low because of transient, organically mediated moods. Studies from the Epilepsy Centers at the University of Washington and Bethel are discussed below. These studies have placed significant emphasis on the area of employment.

Another factor influencing postoperative outcome might be preoperative expectations. Several studies have addressed this
point. Thorbecke⁴³ asked for expected changes in several social domains. The greatest expectations were present for elimination of seizures followed by improved mobility, employment opportunities, sports, leisure time activities, more social contacts, and the hope to find a partner. In fact, the perception of difficulties in any social domain correlated consistently and highly with the strength of the expectation of change after surgery. Wheelock⁴⁴ and Wheelock et al.⁴⁵ asked patients and significant others for expected life changes following epilepsy surgery. Having more friends, being less dependent, others worrying less about the patient, improved marital/family relationships, ability to drive, ability to work, and ability to do more things on his or her own were mentioned most often. Taylor et al.⁴¹ asked 69 patients for expected life changes who already had decided to get surgery, and who were able to depict their postoperative aims with respect to their cognitive and psychiatric status. The mean number of statements was 3 (range 1 to 5). Improved work situation, driving, independence, socializing, and relief of taking medication/relief of side effects were the five most often mentioned aims. Surprisingly, there was little expressed interest in improving cognitive functioning.

An interesting question addressed in these studies is what types of expectations have the best chances to be fulfilled. Wheelock et al.⁴⁵ presented the finding that those patients whose expectations were postoperatively fulfilled were more satisfied. This was associated with better psychosocial functioning. Wilson et al.⁵⁰ asked the patients preoperatively about their expectations with respect to surgery and postoperatively to rate the success. According to the authors, the successful subgroup primarily reported expectations that led to a practical or clearly identifiable result, such as seizure ablation, driving, employment, and the initiation of new activities. In contrast, the not successful subgroup reported less practical expectations (difference for expectations to become employed <.05) but more expectations of psychosocial nature and the expectation that the operation would generally enhance their QOL. In Wheelock’s and Thorbecke’s studies^43,45, it was the opportunity to do these practical things now that was delineated as postoperative changes.

In all three studies,^43,44,45,50 no differences with age or gender were reported and persons who had not become completely seizure free reported fewer changes. Wheelock et al.⁴⁴ and in a similar way Wilson et al.⁵⁰ showed that the expectations of those whose seizures were not completely eliminated but were improved were only slightly or moderately fulfilled. It is evident that these findings should have practical consequences for pre- and postoperative counseling, especially for a better adaptation of those improved but not completely seizure free.

In March 1997, a specialized rehabilitation unit for people with epilepsy was launched within the Bethel Epilepsy Center in order to ameliorate the psychological, social, and vocational consequences of the patients’ epilepsies. This program is mainly funded by the state pension insurance, and is run on an inpatient basis with a capacity of 17 places. Enrolled are mainly patients in danger of losing their work or their working capacity, as well as those with a recently diagnosed epilepsy or with a first seizure for whom the question of suitability for their job and the need for retraining is raised. A further group is patients after surgical treatment of their epilepsy with early relapses or with neuropsychological or psychiatric complications or a high risk for such complications. Interventions mainly include modification of the antiepileptic drug regimen; psychotherapy to improve adaptation to epilepsy; patient education about epilepsy; neuropsychological assessment, counseling, and training; sport/recreational activities; assessment and training of vocational abilities in occupational therapy and in real work environments; assessment of the risks inherent in the patients’ seizures for driving, sports, everyday activities, and certain types of employment; and extensive counseling of patients and relatives. The interventions are carried out by a multidisciplinary team.³⁸

In an ongoing study, a group of 103 patients having temporal lobe resection (TLR) having had surgery after opening of the short-term inpatient rehabilitation unit (STRU) was compared with a group of 103 patients having had surgery before its opening. There were no differences in respect to seizure outcome, side of operation, gender, IQ, and frequency of personality and psychiatric disturbances. The patients operated on after the opening of the STRU were 4 years older than the patients from the early group (p <.05). Of the patients operated on after opening of the STRU, 65 postoperatively were enrolled in the program of the STRU, staying there about 3 weeks. Outcome of the 103 patients with respect to employment was compared between the 103 patients operated on before opening of the STRU and the 115 patients operated on after the opening. “Employed” was defined as “employed in the general labor market, homemakers,” “unemployed” but available in the labor force, on early disability, or “sheltered employment.” Unemployment in both groups preoperatively was 34% 2 years after surgery; without specific rehabilitation intervention, unemployment had risen to 34%, whereas it had fallen to 24% in the intervention group.

At the University of Washington Epilepsy Center,³ differences were assessed in psychosocial functioning utilizing an interviewer-administered protocol, the Washington Structural Psychosocial Review (WSPR), and the Washington Psychosocial Seizure Inventory (WPSI). The study sample included 108 adult patients who had had surgery 5 or 10 years earlier and 83 unoperated controls who had similarly been assessed at 5 and 10 years and were matched by age and education to the surgical group. (Because there were no statistical differences between the 5- and 10-year surgical and control groups, the data were combined.)