Epilepsy: A Comprehensive Textbook
2nd Edition
© 2008 Lippincott Williams & Wilkins
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Chapter 184
Pre-/Postoperative Rehabilitation
Robert T. Fraser
Rupprecht Thorbecke
Introduction
Although evidence regarding the medical benefits of epilepsy surgery continues to increase,11,13 the psychosocial benefits of the operation remain less well studied. Dasheiff et al.9 suggest that the findings concerning the quality of life and functional capacities of patients undergoing resection are not uniformly good. It is important to realize, however, that changes in psychosocial status do not generally occur routinely without some targeted intervention.6 This is particularly so when substantial neuropsychological impairments, behavioral difficulties, psychiatric problems, and limited cognitive functioning are involved. The patient’s situation is further complicated if a difficult seizure disability has been experienced for years with some of the above-mentioned related difficulties. This chapter considers the types and intensity of psychosocial assessment and intervention that are required for psychosocial functioning to be maximized postoperatively.
Psychosocial Outcome in Epilepsy Surgery
Review of the Literature
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
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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
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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 studies43,45, 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.
Studies from Bethel, Germany, and the University of Washington
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.)
On the WSPR protocol, five areas were assessed: Interpersonal skills, emotional adjustment, vocational functioning, adjustment to seizures, quality of life, and an overall adjustment score. Controlling for interaction effects, surgical patients improved significantly more than the controls only on adjustment to seizures (p <.001) and overall adjustment (p <.01). It appears that both the surgery and control groups perceived themselves as improving at follow-up, and only somewhat more so with substantial seizure relief. Batzel and Fraser3 concluded that this finding suggests that there may be some type of “halo effect” to the interview, which may be compounded by a patient’s neuropsychologic impairment, social naiveté, and other factors.
On the self-report psychometric measure, the WPSI, again controlling for interaction effects, the surgical patients improved more than the controls in four areas: Emotional adjustment, vocational adjustment, adjustment to seizures, and overall psychosocial functioning (p <.001). Improvement on the inventory was clearly related to better relief from seizures within the surgery group. Findings appear to be more consistent on this expanded psychometric inventory than in the structured WSPR interview, with its briefer rating format and fewer domains of functioning. It should be noted that changes are not reported in areas more environmentally determined (e.g., interpersonal functioning, family background, and financial status).
One of the more interesting aspects of the findings from the University of Washington research series is related to employment functioning. Discrete aspects of job functioning were compared between surgery patients and controls during the 2 years preceding surgery and the 2 years preceding follow-up.
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Student functioning was examined separately; persons staying at home and individuals receiving workers’ compensation or disability subsidies were excluded from the study. Surgery patients gained in mean number of weeks worked during the second 2-year span (51 weeks after surgery vs. 40 before surgery), whereas the controls actually lost ground (39 weeks before surgery vs. 28 after surgery; significant at p <.01).
The surgery patients also did better than controls in earnings and ratings of job performance. The salary gain was particularly impressive; surgery patients were earning $7.09 hourly at follow-up, a gain of $2.88 from before surgery, whereas controls were earning only $5.19 (significant at p <.01). There was also a consistent trend for patients whose seizures decreased to do better than those whose seizures did not decrease, with the latter faring about the same as the controls or a little worse on job performance. As reported earlier,3 the student surgery group did considerably better at follow-up than the student control group, with 18 of 20 (90%) surgical patients working part to full time at follow-up versus 7 of 15 (47%) of the controls (p <.001). This study makes a strong case for the vocational and financial benefits of epilepsy surgery, which obviously affects a number of psychosocial domains.
Conclusion
As indicated by Dodrill et al.,13 improvement is often selectively found in one or more areas of psychosocial functioning after epilepsy surgery but is certainly not universal in nature. Significant relief from seizures obviously can be associated with significant improvement in various domains of functioning. For patients with a significant neuropsychological, behavioral, or psychiatric disability, there is a general limit or occasional decrement in psychosocial improvement. This group does not routinely experience psychosocial improvement. These patients may specifically require targeted counseling and vocational or other types of intervention preoperatively to realize significant gains or at least adjust better to their outcome status. To date, research has focused on assessment of psychosocial outcome, and controlled studies have related preoperative status to outcome or the benefits of targeted intervention. More detailed analysis of preoperative and postoperative status, as in the studies by Fraser et al.,17 Sperling et al.,40 and Jones et al.,24 provides a better understanding of what is happening and the impact of important variables, such as time from surgery.
Psychosocial Adjustment Modeling around Epilepsy Surgery
Recent studies and perspectives are moving the field toward a more uniform and holistic understanding around the surgery event and a better understanding of points for intervention. Derry and Wiebe11 provide the perspective that preoperative positive psychosocial adjustment, good perceived quality of life, low neuroticism, a tendency toward learned resourcefulness, and available social support all increase the possibility of positive postsurgical outcomes. Poorer prognosis relative to psychosocial outcome related to marked psychological distress, anxiety, and neuroticism; a helpless attitude toward medical self-management; strong unrealistic expectations; and a poor relationship with the patient’s physician. A second domain, as illustrated by Wilson et al., relevant to psychosocial outcome is preoperative expectations.50 Wilson et al.47,48 added the construct of the “burden of normality” or the demand on medically improved patients to discard the sick role. McLachlan et al.33 and Wilson et al.47 added the perspective of lag time in the adjustment process in dealing with this burden and other aspects of psychosocial adjustment. Wilson et al.47 emphasized that it is important to track the burden of normality demands across different domains of psychosocial functioning to include the psychological, behavioral, affective, and sociologic during 2 years postsurgery and ideally more.
Psychosocial Intervention and Goal Planning
Presurgical Expectations of Patient and Family
As discussed, there can be some very unrealistic preoperative expectations on the part of both the patient and family members. This is particularly true for individuals with lower cognitive levels, neuropsychological impairment, and various types of psychiatric disturbances. Minimally, counseling interventions may be necessary to shape these expectations and build a better bridge to goal realization. More probably, however, activities will be needed that help identify the steps involved in realizing goals made attainable by an improved seizure status. Such activities might include preparations for a change in functional status, such as informational interviews with employers, an actual job tryout, visits to technical schools, entrance into training programs, and training in independent living skills (e.g., managing a budget, using public transportation, cooking). An earlier article17 presents one case from the Bethel Epilepsy Center, in which preoperative monitoring was delayed until a patient actually began training in independent living skills, counseling, relaxation exercises, and consideration of vocational options. This patient naively believed that an operation would “fix everything,” and involvement in more purposeful and targeted activity was required by the medical team before further medical intervention was considered. As indicated by Dasheiff et al.,9 patients too often have unrealistic expectations about epilepsy surgery and its outcome. It is often viewed as a method of turning one’s life around without having to invest any more effort into the process other than having surgery. As also indicated by Dasheiff et al., individuals who show the greatest degree of psychosocial improvement (unless they are very young at the time of surgery) have been functioning at a higher level of independence before surgery, so that it is important to promote more independent activity as soon as possible.
Work by Langfitt et al.29 indicated that a family’s predominantly positive affect (e.g., affection, appropriate concern, indications of connectedness, etc.) presurgery was significantly related to postsurgery adjustment on the part of the patient. This group recommended further research on treatments that can improve positive family affect in the patient’s environment and support of autonomous behavior on the part of the patient. Wilson et al.50 also suggested that having both patient and family focus on practical expectations (e.g., driving or making vocational gains) as a function of the operation is a better intervention focus than less tangible psychological or social goals (e.g., self-change or new relationships).
Importance of the Assessment Planning Function
Assessment is generally very carefully done, taking into account the medical variables related to surgery and other significant variables, including duration of disease and age at onset. If a functional change is to occur, it is very important that neuropsychological, psychiatric, and social functioning status also be carefully assessed. Another type of assessment described in a prior study17 includes the actual setting of psychosocial
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goals using goal attainment scaling as developed by Kiresuk and Sherman25 for community mental health programs. In this prior article, specific scales developed for each goal constituted a graded series of possible intervention outcomes. Five-point scales are assigned numerical values: –2 for the least favorable outcome and +2 for the most favorable, with a midpoint at 0. These ratings could be established, for example, in relation to a specific vocational goal. Thorbecke43 used a similar scaling procedure to rate expected levels of functioning in different domains of life on expectation “ladders” with rating rungs numbered from 1 to 10. It is obvious that the more precise the proposed goal and level of expectation, the more probable it is that expectations can be shaped as necessary and goals—or at least more realistic goals—can be achieved. This type of effort would typically be coordinated by a unit social worker, counseling psychologist, or perhaps a nursing coordinator. In the United States today, this type of assessment, goal planning, and scaling of achievements are seldom performed. If a treatment team is interested in effecting significant psychosocial outcomes and quality of life changes with some expediency, it must be performed. Otherwise, the patient may either experience few changes; or, if he or she does achieve them, do so in a more protracted manner, particularly in areas that are more environmentally determined; or could actually lose functional ground, particularly if the operation is not successful.
Steps in Goal Identification
Presurgical Cognitive, Psychiatric, and Social Assessment
Intellectual and neuropsychological assessment is a standard part of the surgical consideration process. With regard to psychiatric or emotional functioning, a psychiatric interview or assessment on the MMPI I or II is also a standard part of the screening process. Because the identification of psychiatric or character issues can have a significant impact on functional outcome, particularly depression or longstanding personality disorders, additional structured psychiatric interviews such as the SCID-II or computerized psychosocial report instruments such as the WPSI are also often used. The Millon Clinical Multiaxial Inventory (MCMI I to III) can be very helpful in identifying personality disorders and longstanding behavioral propensities that relate to axis I diagnoses, such as depression, and can at times benefit from intensive intervention. Personality disorders often go unidentified in the assessment process. Psychiatric conditions are not necessarily a contraindication for surgery, but such individuals may need more monitoring; they can generally benefit from surgical intervention.27,28 If assessment is minimal in this area, it can be difficult to delineate psychiatric and psychosocial issues carefully, and consequently conditions that may be unlikely to change despite changes in seizure status. Additional methods can be very helpful in planning. A series of studies by Derry et al.10,12 suggest that assessment of personal responsibility for seizure occurrences and learned resourcefulness may be key variables in predicting psychosocial functioning and predictive of the need for intervention with certain patients. These authors utilized a modification of a questionnaire by Affleck et al.2 to assess the influence of personal behavior on the occurrence of myocardial infarction. They also utilized a self-control schedule developed by Rosenbaum et al.36 to assess an individual’s level of learned resourcefulness. These measures appear to be very promising in predicting postsurgical psychosocial functioning. Both variables of learned resourcefulness and acceptance of some personal responsibility for seizure occurrences were very predictive of postoperative psychosocial functioning. With severity of illness controlled for, attribution of seizures to stress factors and low level of learned resourcefulness were predictive of postoperative unemployment and receipt of disability benefits. Patients with low levels of learned resourcefulness and high levels of seizure attribution to external stressors might obviously require more intervention than those patients accepting more responsibility for seizure occurrence and having higher levels of learned resourcefulness. Derry et al.12 also considered measurement of perception of social support as relevant to postoperative adjustment.
Steps in Presurgical Planning
The clinical interview, cognitive and neuropsychological testing, and utilization of psychiatric and psychosocial self-report measures can be very helpful in identifying concerns. Individuals who are cognitively and psychiatrically compromised and also perceive themselves as less in control of their seizure status or have low levels of learned resourcefulness may be particularly in need of intervention. As discussed, planning steps can be based on a goal attainment scaling procedure developed by Kiresuk and Sherman,25 in which goals across different domains of psychosocial functioning are clearly established and scaled relative to outcome desirability. The method of Thorbecke43 of scaling levels of expected postoperative outcome relative to functioning in diverse domains of life (e.g., school functioning, social activities, relationship with significant others) on the “1 to 10” rungs of a domain ladder provides a very graphic and simplistic format in which the patient can write expectations that can then be discussed in detail. Necessary steps to reach these goals can subsequently be outlined, which often would be required irrespective of any positive changes in seizure status. Bladin5 described a very comprehensive interview process to explore patient and family issues most germane to adjustment, including the burden of normality.
Approaches to Rehabilitation
Psychosocial Team
To achieve a favorable outcome with regard to psychosocial status, in addition to the neurosurgeon, neurologist, neuropsychologist, and nursing staff, several psychosocial team members are generally necessary. These may include a vocational rehabilitation counselor to assist in educational and vocational planning, a job site coach or mentor, an occupational therapist for training in independent living skills, a rehabilitation psychologist as a primary therapist for the patient and family members, an educational consultant or tutor, and occasionally an assistive technologist or rehabilitation engineer, who can recommend changes in work site procedures, physical modifications to a setting, or assistive equipment (e.g., dictating machines, palm-top computers, electronic toggle switches that cut off power) that will enable individuals to compensate for cognitive limitations and sometimes alleviate physical safety issues. In any case, referral to state or national departments of vocational rehabilitation or developmental disabilities can be very helpful in securing the services of personnel and funding that are critical to making functional gains in the community. These personnel and services are not available at most epilepsy surgery centers.
Type and Timing of Interventions
Presurgical Interventions
As soon as an individual is identified as a surgical candidate in need of intervention, it should be initiated. This obviously
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begins with a comprehensive assessment and proceeds to the identification of optimal psychosocial goals and steps required to reach those goals. Individuals with better independent living skills and vocational and educational functioning before surgery will do better after surgery; any incremental gains that can be established in these and other psychosocial areas before surgery are ideal. Education is an obvious area of intervention for all patients undergoing the surgery. Such education should not be related simply to surgical and presurgical procedures but should also involve some discussion of the transitory emotional stages (e.g., anxiety or depression) and headaches, double vision, and other problems that often affect patients temporarily after surgery. The patient must be made to understand by some key member of the allied health team, ideally a social worker or psychologist, that psychosocial changes do not occur magically as a function of the operation, and that planning for functional changes needs to occur presurgically as soon as possible. As an example, one patient was able to complete a full 6-month course in bookkeeping before surgery. Another voluntarily began a job tryout at a science museum, which evolved into a well-paid job in the wood shop following surgery and an ideal gain in seizure control. The education of family members and significant others can be just as important to the patient’s psychosocial gains. They often need to begin to change expectations and gradually reduce their level of support so that the patient begins to break away from a “dependent and lower resourcefulness” status before surgery; this is particularly important within families that have not supported the patient’s autonomy.
Postsurgical Interventions
Intervention after the operation again often begins with education. Some centers have groups to which the extended family can come to learn more about the postsurgical adjustment process, and more specifically about their loved one’s cognitive, emotional, and physical functioning and seizure status. They can also be further oriented or reoriented to realistic expectations for the patient and appropriate modes of interaction with the patient. At the Bethel Center, formal postoperative workshops of this type have been scheduled.
Cognitive, Psychiatric, and Psychosocial Interventions
Interventions related to optimal postsurgical psychosocial functioning, as discussed above, should begin as soon as possible. Goal setting very obviously needs to take into account the individual’s general intelligence level and any specific neuro-psychological deficits. This can be problematic when certain interventions are being proposed by external state vocational rehabilitation counselors or school personnel, who may not have a complete appreciation of the individual’s difficulties with memory, level of language, capacity for problem solving, or other neuropsychological concerns. Much can actually be accomplished through a team meeting of all involved allied health and service parties; this can be done via speaker phone or other form of telecommunication if the patient lives at some distance from the center and it is difficult to have all members physically present. In one case at the University of Washington Epilepsy Center, a child’s school speech and language pathologist, school psychologist, and teacher were all sent for individualized instruction with members of the allied health team. Future communication will be accomplished by conference calls. Knowledge of the individual patient’s cognitive strengths and areas of weakness is crucial, and this basic understanding is often lacking or partially lacking.
If patients have difficulty in a specific area of cognitive functioning (e.g., receptive speech, visual-spatial memory, speed of information processing), changes in procedures, physical modifications to an activity site, or assistive equipment at the workplace can be very beneficial. The input of the neuropsychologist can be very helpful in regard to procedural changes. The arrangement of physical modifications or assistive equipment required because of a cognitive problem is often discussed and negotiated by a neuropsychologist and a rehabilitation engineer (assistive technologist) or speech and language pathologist. Most interventions in this area relate to procedural changes (e.g., an individual performing a job from late afternoon to early evening because of attention deficits in a chaotic work setting) or low-cost assistive equipment (e.g., an electronic timer on a watch as a reminder to take medication or a palm-top computer to store important dates, car maintenance schedules, and other organizational aspects of daily living).
Interventions related to emotional functioning generally consist of efforts to ameliorate anxiety or depression, sometimes through antidepressant and antianxiety agents. Verbal psychotherapy that includes supportive interpersonal counseling, utilization of cognitive behavioral strategy, encouragement of moderate programs of physical exercise, building social support, scheduling of social events within budget, and other psychotherapeutic interventions are common. Psychotherapy for individuals with dependent personality propensities can be particularly significant. This intervention can involve Socratic questioning regarding goal identification and steps needed to reach goals, reinforcement of gains, and a general effort to empower the patient and family members to choose and implement steps toward improved psychosocial functioning in the home, at work or school, and within the community.
With regard to social deficits, action steps must be taken presurgically to enable the patient to reach expected changes or precise psychosocial goals. If there are deficits in independent living, this issue can often be remedied through training by an occupational therapist or an assigned trainer from a developmental disabilities agency, or through formal training in budgeting, shopping, or cooking provided by local epilepsy associations. In sum, psychosocial functional changes do not occur spontaneously, and specific steps must be taken to ensure that an individual is functionally capable of living independently, particularly if there is a dramatic reduction in seizure activity.
Remediation of employment or educational deficits can often be accomplished through referral to a local vocational rehabilitation agency within the United States. This agency will assist in providing funding for a vocational evaluation, community-based assessment, and structured job tryout; develop a formal on-the-job training program or job coaching program; or simply assist the patient in obtaining direct placement. In some cases, technical or formal academic education may be recommended, depending on the individual’s cognitive capacities, age, and personal desires. Germany and several other countries have specialized work training centers for individuals with epilepsy.
Whenever possible, a representative of the school system should be included in the planning process if the patient is a youngster or an adolescent. In the United States, specific required transition steps may be built into the individual education plan (IEP), for which the school system is responsible. These plans are often more effective if a vocational rehabilitation counselor, social worker, or neuropsychologist affiliated with an epilepsy center provides direct input. For a number of youths, there needs to be a very delicate balance between mainstream and special educational experiences and the development of independent living skills and work-related abilities. Some students within the United States who are eligible for generic developmental disabilities services are kept in school until the age of 21, supposedly as a service to the family. This is often done simply because of lack of direction or considered options on the part of school personnel, parents, and
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other concerned parties. For youngsters with improved seizure status and residual cognitive disabilities, development of school-to-work plans, vocational and technical training, and interpersonal skills training programs need to be fostered as soon as possible. Activities such as observing people at work, instruction in work-related interpersonal skills, trips to job sites at an appropriate cognitive level for a youngster, and vocational skill development often need to begin during the freshman year of high school. For youngsters with improved seizure status but residual associated disabilities postoperatively, a routine school-to-work transition is often not to be anticipated.
Youngsters with severe epilepsy and accompanying cognitive limitations can be socially isolated to a considerable degree. Assessment by therapeutic recreational specialists can be very helpful to identify leisure time activities and hobbies in which such children can develop competency and that they can use as a social medium. Their peers who are not disabled often develop social skills while engaging in such leisure time activities, and youngsters with severe epilepsy who are anticipating surgery need similar experiences. Work at the University of Washington Epilepsy Center7 indicates that groups for teenagers are very well attended, as these children seldom have contact with other teenagers because of the problem of frequent, unanticipated seizures. This type of contact can help them to become less self-absorbed and more interested in directed and positive life activities. It can be particularly helpful if formal psychotherapeutic group experiences are mixed with social trips and activities within the community. Adults can similarly profit from this type of leisure time assessment services. On a one-to-one basis, a social worker or counselor can arrange participation in local programs, such as a YMCA physical conditioning program or an age-appropriate social group. When possible, involving several individuals who are to undergo surgical intervention in a specific group can be helpful. Community mobility is often a problem for individuals with severe seizures. Some of these issues can be remedied by training in use of the bus system and any specialty transportation that may be available in the community. Involvement in social groups can also be helpful because transportation options are often available for all group members, or the significant others of group members can alternate in providing transportation.
McCullough et al.34 have described a multidisciplinary follow-up program for 40 patients who underwent temporal lobe resection at the UCLA neuropsychiatric hospital. In addition to a number of medical and cognitive concerns, several psychosocial concerns needed to be addressed and referrals made. Difficulties at school or work, family readjustment concerns, transitory depression, and changes in attitudes and expectations were common. Through standard monthly contact by an assigned member of the multidisciplinary team, many of these concerns could be triaged effectively and referral made as necessary. Interdisciplinary staffing was also helpful in resolving concerns with appropriate interventions. It would seem that this type of follow-up approach, which can involve simple reassurance and triage, not only fosters and maintains effective psychosocial functioning, but also reduces demands on the medical system and reinforces medication compliance and other aspects of the medical regimen.
Bladin5 discusses the use of the comprehensive Austin Comprehensive Epilepsy Program (CEP) interview at intake, but more importantly at follow-up periods of 1, 3, 6, 12, and 24 months postsurgery. The interview explores in-depth both patient and family concerns, and that the interview’s focus differs over the follow-up period reflects the evolution of the adjustment process. Wilson et al.48 indicated that a 2-year follow-up period could be minimal. Work by Wilson et al.49 suggests that psychosocial outcome trajectories can be identified by temporal markers and that patients evidencing markers for negative psychosocial outcome might be better identified for intervention. Cost-effective models of phone follow-up at scheduled intervals can also be borrowed from other disability groups (e.g., the problem identification and triage approach as applied in the field of traumatic brain injury by Bell et al.4). Currently, there is a lack of standardized approach to pre- and postsurgical assessment and intervention throughout the industrialized world, while the epilepsy operation itself is becoming relatively common.
Assessing Effect of Surgery with Regard to Rehabilitation and Psychosocial Functioning
Psychometric Measures
(See also earlier section on Psychosocial Outcome in Epilepsy Surgery.) Cramer8 has reviewed a number of the new psychometric instruments for assessing quality of life, including the QOLIE-89, QOLIE-31, and QOLIE-10. These have been developed as measures of overall patient functioning, with those quality-of-life instruments that comprise a larger number of items and the ESI-55 measuring a number of domains of functioning. These tools provide a means for comparing the effect of different surgical outcomes on diverse areas of functioning, including psychosocial, cognitive, and physical health status. To some degree, they can be helpful for assessing the psychosocial impact of an intervention, as can the WPSI. For purposes of planning rehabilitation and fostering psychosocial gain, however, more specific instruments relating to goal attainment and level of expectation within specific domains of functioning are probably more appropriate, as are other comprehensive interview methods as previously discussed.
Community-based Measures of Effectiveness of Rehabilitation
Although it is at present not done at most centers, it will be necessary to utilize discrete measures of community-based functioning to evaluate more precisely the impact of surgery on psychosocial outcome. Clarification of outcome will be based on scaling of goal attainment or other direct measures of community functioning, such as discrete measures of independent living competencies, number of credit hours taken in school (mainstream vs. special education), grade point average, number of weeks worked full time or part time, hourly wage, promotions, and other indications of upward job mobility. Currently, assessment of functioning in these areas is not routinely done because it is time-consuming and costly, and because of a community re-entry time curve, these discrete measures may not reveal changes for some time postoperatively.
Synthesizing Psychometric and Community-based Measures of Functioning
As underscored by Fabian14 and Batzel and Fraser,3 accurate assessment of the psychosocial impact of surgery will eventually require an approach that includes follow-up interview, quality-of-life and WPSI self-report measures, and discrete measures of functioning within the community. Thorbecke42 pointed out that it must be differentiated between quality-of-life measures, which are subjective in nature and strongly determined by emotional well-being,31 and more objective measures of life
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functioning. In this context of reasoning the Bethel group developed the PESOS (Performance, Sociodemographic aspects, Subjective evaluation/estimation) questionnaire. The PESOS questionnaire comprises demographic and clinical data, items on performance in daily activities, and quality-of-life scales.32 Use of multiple types of measures allows better assessment of different domains of functioning and a more comprehensive view of postsurgical psychosocial outcome.
Future Directions
Postoperative Lifestyle
In years to come, there will be an increasing emphasis on the postoperative lifestyle of the patient. The study by McCullough et al.34 indicates a number of postoperative issues that deserve attention and intervention, such as independent tapering of drugs by the patient, sexual concerns, sleep disruption, pain, and limited jaw motion. These patients may be “trying on” new life activities and behaviors, and at times the overly confident or naive push their capabilities and place themselves at risk for additional difficulties. It would appear that monthly monitoring by an assigned team member might dramatically curtail injurious or negative behavior while reinforcing positive, goal-related steps. This postoperative period, associated with a number of physical or emotional complications of the desire and expectations for life gains, is a difficult time. For a number of patients, particularly those with poor social support, it can be a particularly confounding experience. This period of time requires more team attention and an emphasis on intervention follow-through.
Social Support
In addition to monitoring by an assigned team member, promotion of social support activities can be very helpful for postoperative patients. Linking patients presurgically with successful postoperative patients can be both inspiring and comforting. Receiving instruction regarding to the diverse aspects of the operation in a group setting can also be very comforting. Promoting preoperative and postoperative development of small groups that include patients’ significant others can have a very positive effect but should be monitored to some degree based on patient homogeneity. Individuals with a number of associated impairments, particularly postoperatively, are simply not going to do as well psychosocially as successful peers, and group experiences may be rather difficult within the context of others who are doing well and making significant life gains. Phone networks can be helpful for individuals who are coming into a center from rural areas and have no contact with others who have experienced surgery and, in some cases, no contact with others who have the disability. Parents who are attempting to change expectations and set new realistic goals for a son or daughter could benefit from contact with other parents and the significant others of those undergoing similar experiences.
Dealing with Postoperative Complications
There are a number of postoperative issues that occur infrequently but present decided concerns for individuals who experience them. These can include visual field problems, double vision, memory decrements, word-finding problems, and other, usually subtle, neuropsychological concerns. In some cases, these problems are transitory in nature. When visual problems are not temporary, referral to a neuro-optometrist or neuro-ophthalmologist can be helpful. In some cases, those with visual problems can profit from training in scanning and visual perception techniques,21 but longer-term concerns can require considerable time for adjustment.
Memory problems can be overcome through training in association techniques and categorization of information that needs to be remembered, as well as the use of electronic calendars, palm-top computers, notebooks, and diverse electronic cueing devices. Some patients who make the effort and are well organized can perform as well or actually better than peers. Individuals with language problems, particularly word finding, can be coached to “stall” or have a question repeated until they can respond appropriately. For individuals with more complicated cognitive problems, such as paresthesias, psychotherapy can aid in adjustment. It must be emphasized that complications occur in a minority of cases, but unforeseen complications do occur.
New Research Directions
As mentioned earlier, future research should focus on more detailed analysis of preoperative and postoperative psychosocial functioning using a multimethod approach that includes structured interview quality-of-life inventories and discrete measures of community functioning. A multimethod approach would thus include the perception of patients and their significant others of the psychosocial impact of the surgery. The inclusion of more discrete measures of community functioning (e.g., weeks worked on a full-time or part-time competitive basis) provide more of a “tire meets the road” view of outcome. Detailed, multimethod preoperative and postoperative assessment, including new measures such as learned resourcefulness, burden of normality, and causal attribution of seizures, will make possible more precise identification of those most in need of preoperative and postoperative intervention, leading in turn to better characterization of those who require interventions, even among the group that are currently anticipated to have problems (i.e., those with associated disabilities, who are older, and have a longer seizure history). Eventually, it is hoped that preoperative and postoperative evaluation of interventions will be done more frequently.
Summary and Conclusions
This chapter has reviewed the literature on psychosocial outcomes following epilepsy surgery and predictors of postoperative functioning. A perspective has been offered on both the preoperative psychosocial assessment process and the importance of refining the expectations of patients and their significant others to establish realistic postoperative goals. It has also been emphasized that psychosocial or rehabilitative intervention must begin before surgery and that psychosocial functional changes will not take place incidentally, except perhaps in the case of those who are relatively young at the time of surgery. It is also critical that more detailed, multimethod analysis of psychosocial functioning be conducted preoperatively and postoperatively as progress is made toward more targeted intervention to improve postoperative functioning. Much remains to be done to improve the psychosocial functioning of a patient who is being rendered physically functional through the benefits of epilepsy surgery. Progress in overcoming rehabilitation challenges is made difficult by limited personnel, limited funding, geographic distances, and to some degree limited emphasis on the part of the medical community. It is hoped that this attitude will change in the future, with greater emphasis placed on evaluating psychosocial interventions before and after the operation, as opposed to assessing quality-of-life changes as a function of the medical intervention.
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Acknowledgment
Appreciation is extended for partial research review by the National Epilepsy Library at the Epilepsy Foundation (United States).
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