Epilepsin. 31(1):75-82, 1990 Raven Press, Ltd., New York 0 International League Against Epilepsy
Sepulveda Epilepsy Education: The Efficacy of a Psychoeducational Treatment Program in Treating Medical and Psychosocial Aspects of Epilepsy David C. Helgeson, *Robert Mittan, Sang-Yang Tan, and tSirichai Chayasirisobhon Graduate School of Psychology, Fuller Theological Seminary, Pasadena; *Sepulveda V A Medical Center and Department of Neurology, UCLA, Los Angeles; and fKaiser Permanente Medical Center, Anaheim, California, U.S.A.
Summary: The present study evaluated the efficacy of the Sepulveda Epilepsy Education program (SEE), using a controlled outcome design. SEE is a 2-day psychoeducational treatment program designed to provide medical education and psychosocial therapy. Thirty-eight outpatients, matched according to seizure type and frequency, were randomly assigned to treatment (n = 20) or waitinglist control (n = 18) groups. The major outcome measures used were a 50-item true-false test specifically designed to evaluate the SEE program, the Washington Psychosocial Seizure Inventory, the Beck Depression Inventory, Lubin’s Depression Adjective Checklist, the State-Trait
Anxiety Inventory, the Acceptance of Disability Scale, and Sherer’s Self-Efficacy Scale. Significant differences between the two groups were found on the three major subscales of the 50-item true-false test. The treatment group demonstrated a significant increase in overall understanding of epilepsy, a significant decrease in fear of seizures, and a significant decrease in hazardous medical self-management practices. In addition, an objective measure of blood levels of antiepileptic drugs (AEDs) showed the treatment group to have a significant increase in medication compliance. Key Words: Epilepsy-BehaviorSocial adjustment-CompliancePatient education.
Much epilepsy research has focused on understanding the neurologic mechanisms of seizures (e.g., Sherwin, 1982) and how to control seizures through use of antiepileptic drugs (AEDs) (Taylor and McKinlay, 1984). The importance of AEDs is clear since seizures can be completely controlled in >50% (Commission, 1978), and well controlled in 3 0 % of patients (Lechtenberg, 1984). Although the importance of seizure control through use of AEDs cannot be overestimated, the Commission for the Control of Epilepsy and its Consequences (1978) has asserted that patient ignorance and psychosocial problems are often more disabling than the seizures themselves. High rates of psychosocial problems among individuals with epilepsy have been reported (e.g., Wright, 1975; Rodin et al., 1977; Scott, 1978; Ozuna, 1979; Dodrill et al., 1980, 1984; Fraser, 1980; Dodrill and Batzel, 1981; Tan, 1983, 1986;
Whitman et al., 1984). Serious emotional problems that may result are severe loss of self-esteem, anxiety and depression, withdrawal from society, and a subsequent inability to interact appropriately with others. Even persons who appear to adjust successfully to social problems must continually cope with the fears and uncertainties imposed by epilepsy. No matter how well-controlled a person’s seizures are, the fear of seizures may always be present, for e p ilepsy is more a threat than an active condition (Lechtenberg, 1984). A recent study of 373 epilepsy patients indicated that many harbor fears of death and brain damage and suggested that these fears may be a leading cause of psychosocial impairment (Mittan, 1986). Dealing with all these various psychological and sociologic factors is crucial to making a positive adjustment to epilepsy. Such emotional factors may become the most important determinants of motivation to carry out a medication regimen and adapt to the more or less altered situation of life (Laaksonen, 1983). Yet, AED noncompliance continues to be a foremost cause of seizure exacerbation (Barry, 1982). At least one third of patients do not
Received June 1988; revision accepted March 1989. Address correspondence and reprint requests to D. C. Helgeson at Graduate School of Psychology, Fuller Theological Seminary, 180N.Oakland Ave., Pasadena, CA 91101-1790, U.S.A.
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D . C . HELGESON ET AL.
achieve seizure control because of lack of AED compliance (Commission, 1978). The main reasons are probably lack of instruction, misinterpretation of instructions, or lack of understanding. The Commission for the Control of Epilepsy and its Consequences (1978) clearly stated the need for understanding and knowledge: “The understanding that an individual has about any disability is directly related to the success the individual has in coping with the disability” (p. 133). Patients, therefore, need to accept primary responsibility for coping with their disorder and maintaining their health (Riddle, 1980). The Commission also stated that almost no research is being done on the delivery or effectiveness of services for people with epilepsy. The purpose of this study was to evaluate the effectiveness of a new therapeutic program: Sepulveda Epilepsy Education (SEE). This 2-day patient/ family treatment program was designed to meet a broad range of medical education and psychosocial treatment needs economically. The SEE program uses a psychoeducational treatment approach to deliver psychosocial help and health education. In accordance with the Commission’s findings, the underlying belief behind SEE is that an adequate understanding of epilepsy is essential to effective coping with the disorder. Preliminary results from a sample of 40 SEE programs presented across the United States and in New Zealand have been obtained through evaluation of 488 participants, using 50-item pre- and posttests (Mittan, 1985). Although initial results appear encouraging, they involve only a pretest and immediate posttest, without use of appropriate control groups or follow-up evaluations. The need for better outcome studies using control groups (e.g., waiting list andor attention placebo groups) has been underscored by findings reported by Tan and Bruni (19861, in a controlled outcome study of group cognitive-behavior therapy for reducing psychosocial difficulties and seizures in adult epilepsy patients. This study was designed to evaluate the effectiveness of the SEE program with the use of a number of objective paper-and-pencil inventories. We used a controlled outcome design with a treatment group and a waiting-list control group. In addition to the pretest and immediate posttest measures, we included a 4-month follow-up to assess long-term effects of SEE. The major hypotheses were that the treatment group would show an increased understanding of epilepsy, a decrease in fear of seizures, and significantly more improvement in medical selfmanagement, blood AED levels, depression and anxiety, self-efficacy, and greater acceptance of
Epilepsia. Vol. 31. No. I . 1990
their epilepsy as compared with the waiting-list control group. METHODS Participants and setting One hundred twenty adult epilepsy outpatients at Kaiser Permanente Medical Care Program ClinicBellflower, California, U.S.A. were asked to participate in the study. The 100 patients who agreed to participate were matched on the variables of seizure type and frequency and were randomly assigned to either treatment or waiting-list control group. All patient-participants were diagnosed with epilepsy and were receiving AEDs. Mentally retarded, demented, or psychotic patients were not included. Of the 50 patients assigned to the treatment group, 23 attended the weekend SEE program and completed the preassessment questionnaires. Of 50 patients assigned to the waiting-list control group, 20 completed preassessment questionnaires. At 4-month follow-up, 1 of the 23 treatment participants was found to have attended portions of a previous SEE program, whereas 2 others had attended only 1 day and were excluded from the study. Of the 20 waiting-list control group participants, 18 returned follow-up questionnaires. The final sample included 38 patients, 20 in the treatment group and 18 in the waiting-list control group. Treatment programs were conducted on two separate weekends 4 months apart. The first weekend program was for the treatment group; the waitinglist control group was invited to attend the second weekend program conducted 4 months later. Table 1 shows demographic characteristics of the two groups. Statistical analyses revealed no significant differences among the two groups on any of the variables outlined in Table 1.
Measures of outcome Anxiety and depression Level of anxiety was assessed by the State-Trait Anxiety Inventory, State Anxiety Scale STAI (AState), developed by Spielberger et al. (1970). Depression was assessed as both trait and state. Stable traitlike properties of depression were evaluated by the Beck Depression Inventory (BDI, Beck et al. 1961). Transient statelike depressive qualities were assessed by Lubin’s Depression Adjective Check List (DACL, Lubin, 1967). Washington Psychosocial Seizure Inventory ( WPSI)
The WPSI, designed specifically for persons with epilepsy (Dodrill et al., 1980), was used to measure
SEPULVEDA EPILEPSY EDUCATION
77
TABLE 1. Demographic characteristics of treatment and control groups Variable Sex F M Mean age, yr (SD) Mean education, yr (range) Mean age at onset of seizure disorder, yr (SD) Mean duration of seizure disorder, yr (SD) Mean seizure frequencyho at time of preassessment (SD) Seizure type (no. of patients) Generalized tonic-clonic Complex-partial Complex-partial secondarily generalized Partial sensory Partial motor Etiology Idiopathic Structural malformation Closed head injury CVA CNS infection EEG Abnormal Epileptiform pattern
Control group
Treatment group
14
14
4 38.56 (10.67) 13.44 (SD = 2.33) (8-18)
6 36.15 (12.81) 13.65 (SD = 2.35) (11-20)
23.39 (16.14)
18.80 (13.22)
15.44 (11.14)
17.40 (10.78)
2.05 (4.73)
2.47 (3.98)
6 4
6 6
6 0
7
1
0
13 I 2
16
1
1
3 0 0
1 1
9 7
11
7
~
CVA, cerebrovascular accident; CNS, central nervous system.
psychological and social problems. The WPSI consists of family background, emotional adjustment, interpersonal adjustment, vocational adjustment, financial status, adjustment to seizures, medicine and medical management, and overall psychosocial functioning scales. Coping with epilepsy The Acceptance of Disability (AD) scale developed by Linkowski (1971) was used as a self-report measure of coping with epilepsy. AD primarily measures the extent to which a person is able to deemphasize the negative aspects of disability and emphasize positive assets and abilities. For this study AD was adapted by replacing the term “disability” in the wording of the text items with the term “epilepsy. ”
Self-efficacy Sherer’s (1982) Self-Efficacy Scale was used to assess self-efficacy expectations, both generally and socially. Self-efficacy theory (Bandura, 1977) proposes that expectations of personal mastery and success exert a tremendous influence on psychosocia1 functioning. Perceived self-efficacy expectations have also been shown to play a significant role in adherence to preventive health programs (O’Leary, 1985), and may have impact on adherence to an AED regimen.
Epilepsy knowledge and medical management All patients received a SO-item true-false questionnaire (Mittan, 1986)designed to measure knowledge about epilepsy and assess medical selfmanagement practices. Embedded in this inventory was a 15-item “fear of seizures” scale designed to assess patients’ fears of death and brain damage due to seizures. Medical management was assessed by recording the following objective measures before and after the 4-month period following SEE participation: (a) number of prescribed AEDs, (b) AED blood level, and (c) seizure frequency.
Procedure After assignment to either the treatment or waiting-list control group, informed consent was obtained. Preassessment was conducted by paperand-pencil tests, immediately before program participation. The waiting-list control group had been mailed the paper-and-pencil measures earlier in the week, together with completion instructions. Immediately after SEE participation, the treatment group again completed the assessment battery. Both groups completed the battery again at 4-month follow-up. Paper-and-pencil inventory results were analyzed with repeated-measures analyses of variance (ANOVA), allowing comparison between treatment
Epilepsia, Vol. 31, No.1 , 1990
D . C . HELGESON ET AL.
78
ANOVA yielded significant findings, both in terms of main effects of groups and time, and for interaction of the groups x time, which is the critical statistic that shows whether changes in the treatment groups can be considered significant over and above changes seen in both groups due to time passage. Significant groups x time interactions were obtained on the SEE fears subscale, the hazardous medical self-management subscale, and the total score, which measures the extent of patient's misinformation and misconceptions regarding epilepsy. As compared with the control group, the treatment group showed a significant decrease in level of fear of death and brain damage due to seizures, F( 1,36) = 7.49, p < 0.009. Also, in addition, as compared to the control group, the treatment group showed a significant decrease in hazardous medical selfmanagement practices, F(1,36) = 29.67, p < O.OOO1. Moreover, the group attending SEE also demonstrated a significant decrease in overall level of misinformation and misconceptions regarding epilepsy, F(1,36) = 39.74, p < O.OOO1, as compared with the control group.
and waiting-list control group across time, from preassessment to 4-month follow-up. Repeated measures ANOVA was used to analyze monthly seizure frequency and percentage change in blood levels. Immediate treatment program effects were analyzed by conducting a series of paired t tests for the treatment group. RESULTS
At preassessment, ANOVA showed few significant differences among the two groups on any of the dependent measures. The only significant differences between the two groups at preassessment were on DACL and STAI (A-State). The control group scored significantly higher on DACL, F( 1, 36) = 7.02, p < 0.012, and on STAI (A-State), F(1, 36) = 8.69, p < 0.006. Higher scores on these measures indicate higher levels of depression and anxiety, respectively.
Repeated-measuresANOVA for paper-and-pencil tests Table 2 shows means and SDs of the paperand-pencil tests. A series of repeated-measures
TABLE 2. Outcome scores (mean
+ SD)at preassessment and at 4-month follow-up with F statistics F Score ~
Control group
Treatment group F'reassessment
Follow-up (4 mo)
Interaction effect (groups x time)
Main effect (time)
Main effect (groups)
3.17 (2.78)
2.25 (1.41)
0.85 (1.27)
7.499
4.556
4.4@
6.67 (2.61)
7.67 (1.97)
6.85 (2.56)
3.2 (1.61)
29.67'
11.53"
13.52d
15.39 (4.95) 240.67 (43.23) 10.56 (9.4) 10.61 (6.23) 42.83 (9.95)
14.33 (5.83) 243.33 (50.47) 11.06 (10.89) 8.22 (4.31) 39.22 (15.3)
7.05 (2.76) 258.45 (25.88) 6.25 (4.19) 8 (4.54) 36.45 (8.84)
39.74' 0.726 6.34 2.58
24.W 2.51 0.385 0.163 0.014
10.76" I .07 2.65 2.90 4.03
61.70 (12.95) 19.75 (5.85)
1.32 4.58
1.74 0.490
0.017
0.095
0.01 0.852 0.003
~
Scale SEE 50-item questionnaire Fears of death and brain damage due to seizures subscale Hazardous medical selfmanagement practices subscale Total score = overall misinformation and misconceptions Acceptance of Disability Beck Depression Inventory Depression Adjective Checklist State-Trait Anxiety Inventory Sherer's Self-Efficacy Scale General Social Washington Psychosocial Seizure Inventory (WPSI) Family Background Emotional Adjustment Interpersonal Adjustment Vocational Adjustment Financial Status Adjustment to Seizures Medicine and Medical Management Overall Psychosocial Functioning Critical Items No. of blank items Lie items Ram items Seizure frequency a
Preassessment
Follow-up (4 mo)
2.94 (3.52)
60 (9.59) 19 (4.86)
63.89 (10.06) 21.22 (4.52)
61.35 (11.25) 20.75 (4.89)
2.39 (2.17) 12.94 (6.47) 5.5 (5.07) 4.17 (3.4) 2.89 (1.94) 5.11 (3.77)
2.5 (1.86) 13.06 (7.86) 5.61 (5.07) 4.39 (4.03) 3.5 (2.41) 4.17 (4.05)
1.75 (1.77) 12.60 (5.03) 5.15 (4.51) 4.10 (3.56) 2.3 (2.03) 4.95 (2.93)
1.7 (1.9)
1
0.009
5 (4.3) 3.7 (2.94) 2.3 (2.43) 2.95 (2.33)
0.065 0.595 1.41 1.31
1.27 10.58"
1.60 0.467 0.11 0.127 1.77 0.505
11 (4.38)
0.998
0.068
2.67 (2.14)
2.11 (1.97)
2.00 (1.78)
2.15 (2.16)
1.32
0.36
0.295
17.28 (10.63) 6.83 (5.62) 0.72 (1.67) 2.22 (1.87) 2.28 (3.77) 2.14 (4.72)
17.61 (13.11) 6.78 (6.56) 0.44 ( I .2) 2.06 (1.63) 1.39 (1.46) 2.05 (4.73)
16.35 (7.48) 5.9 (3.31) 0.4 (1.19) 2.3 (1.92) 1.45 (1.4) 2.47 (3.98)
13.65 (6.7) 4.25 (2.85) 0.2 (0.52) 2.25 ( I 5 9 ) 1.45 (1.57) 2.32 (4.01)
1.84 2.19 0.02
0.265 2.77 0.761
0.044
0.144
1.03 0.129
0.926 2.12
0.69 I .43 I .02 0.075 0.514 0.045
p < 0.01; bp < 0.05; 'p < O.OOO1; "p < 0.001.
Epilepsia, Vol. 31. No. 1. 1990
14.05 (4.08) 249.15 (24.4) 8.05 (5.03) 6.45 (3.1) 33.65 (9.26)
SEPULVEDA EPILEPSY EDUCATION
Significant main effects of time and groups were also found on the above scales. Significant main effects of time were apparent on the SEE fears subscale, F( 1,36) = 4.55, p < 0.04; the hazardous medical self-management subscale, F( 1,36) = 1133, p < 0.002; and the total score, F(1,36) = 24.9, p < 0.0001. The significant main effects of groups were: On the SEE fears subscale, F( 1,36) = 4.4, p < 0.04; on the hazardous medical self-management subscale, F(1,36) = 13.52, p < 0.001; and on the total score, F(1,36) = 10.76, p < 0.002. Seizure frequency data The repeated-measures ANOVA performed on patient reported monthly seizure frequency data yielded no significant differences between the treatment and waiting list control group from preassessment to follow-up (Table 2). Preassessment scores were based on average monthly seizure frequency during the 4 months before the SEE program, and follow-up scores were based on average monthly seizure frequency during the 4 months after the SEE program. Paired t test results for the treatment group Although our primary interest was in long-term effects of the SEE program, we also investigated immediate effects. Due to the intensive type of intervention involved, and the proximity in time between the pre- and immediate postassessment (2day), control group subjects were not asked to complete the immediate postassessment. They had neither attended the SEE program nor participated in any comparable intervention; hence, they were not expected to show significant changes in the 2day interval. Therefore, paired t tests were performed to assess only the treatment group’s changes from pre- to immediate postassessment. In addition to the long-term decrease in hazardous medical self-management practices, fear of death and brain damage, and overall misinformation and misconceptions about epilepsy, the treatment group, by within-group analyses, also showed a significant decrease in level of depression from pre- to immediate postassessment, as measured by the BDI (t = 3.76, p < 0.0007), and a significant increase in acceptance of epilepsy, as measured by the AD scale (t = 2.28, p < 0.017). The treatment group also showed significant improvement in adjustment to seizures from pre- to immediate postassessment ( t = 2.54, p < 0.009), as measured by the WPSI Adjustment to Seizures scale. This notable immediate improvement in adjustment to seizures appeared to be maintained across time; the withingroup analysis showed a significant improvement from preassessment to 4-month follow-up (t = 3.18,
79
p < 0.002). The only other significant within-group change was the WPSI Overall Psychosocial Functioning scale, on which significant improvement was demonstrated from pretest to follow-up (t = 2.33, p < 0.016). This observation is especially notable, since this change indicates a trend toward continuing improvement in a 4-month period. In addition to the statistically significant withingroup changes described, a number of important trends were observed. First, on the WPSI Emotional Adjustment scale, the treatment group’s mean scores decreased from 12.6 to 11.2 to 11 across the three assessment periods. There was a trend for improvement in emotional adjustment from pre- to immediate postassessment ( t = 1.58, p < 0.065). There was a trend toward continuing improvement in emotional adjustment in the 4-month follow-up (t = 1.68, p < 0.055). On the WPSI Interpersonal Adjustment and Vocational Adjustment scales, the treatment group’s scores suggested not only immediate improvement, but continuing improvement at 4-month follow-up. In relation to the treatment group’s apparent improvement over time on the WPSI measures, the control group’s scores indicated trends toward further decreases in adjustment levels in a 4-month period. Percentage of change in blood levels We hypothesized that the treatment group would show improvement in medical self-management that would be reflected in improved AED compliance. We predicted that this would be shown not only in self-report measures, but also in the objective measure of blood AED levels. The number of participants involved in this part of the analysis was 26 (9 control and 17 treatment). Medication compliance was evaluated by comparing the percentage change scores in blood AED levels from prestudy to follow-up. The treatment group showed significantly increased compliance by ANOVA, F( 1,24) = 4.18, p < 0.05. Mean percentage change at 4-month treatment group followup was a 70% increase in blood levels. Mean percentage decrease for the control group at follow-up was 18% (Fig. 1). Percentage change scores were calculated by follow-up blood level minus preassessment blood level divided by preassessment blood level and multiplied by 100 to yield percentages. Depressed versus nondepressed patients We hypothesized that the treatment group would feel less depressed than the waiting-list control group. However, mean preassessment BDI scores for both treatment and waiting-list control groups were below cutoff scores suggestive of depression. Therefore, to expect the treatment group to imEpilepsia, Vol. 31, No. I , 1990
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treatment
FIG. 1. Percentage change in blood levels from preassessment to follow-up.
I----
control
10
-10
- 30 followup 4 month
Pr‘e
PLASMA LEVELS
prove on this measure was deemed inappropriate. Consequently, a subgroup of patients considered “depressed” was identified (BDI scores 3 lo), and a subsequent series of repeated-measures ANOVA was performed. In the larger “nondepressed” sample, the control group’s mean BDI depression score increased from 10.56 at preassessment to 11.06 at follow-up. The treatment group’s mean depression score decreased from 8.05 to 6.25, but ANOVA identified no statistically significant difference between the two groups. When only depressed patients were included in ANOVA, the treatment group’s BDI scores decreased from 13.57 at preassessment to 8.14 at 4-month follow-up, moving from the depressed to the nondepressed range. The control group’s mean BDI scores decreased from 16.11 to 14.67, but remained in the depressed range. Thus, there appears to be a trend in the expected direction of less depression for the treatment group, but the depressed subgroup consisted of only 16 patients (9 control and 7 treatment), and therefore was too small to achieve statistically significant results. DISCUSSION Results of our controlled outcome study provide limited but encouraging support for the efficacy of the SEE program in treating medical and psychosocial aspects of epilepsy. In light of the somewhat small sample size, only a few significant main outcome measure results were obtained: In comparison to the control group, the treatment group showed a significant decrease in level of fear of death and brain damage due to seizures, a significant decrease in hazardous medical self-manageEpilepsia, Vol. 31, N o . 1. 1990
ment practices, and a significant decrease in overall level of misinformation and misconceptions regarding epilepsy. On the other hand, the SEE program had to produce relatively large and sustained treatment effects for significance to be reached with such a limited sample size across a 4-month period. Other measures used to evaluate the efficacy of SEE in alleviating psychosocial problems revealed less impact. For example, BDI data failed to support the hypothesis that treatment group patients would be significantly less depressed after participation. There was a significant within-group decrease in depression immediately after SEE. However, although the 4-month follow-up mean score suggested a trend in the direction of less depression, statistical significance was not achieved. A possible explanation for the lack of impact in lessening depression is that both the treatment and control group consisted of patients who were not clinically depressed. Therefore, it was unrealistic to expect nondepressed patients to be even less depressed as a result of attending a weekend seminar. However, a post hoc analysis of depressed patients suggested clinically significant change; i.e., the follow-up mean score of the depressed control group was still in the depressed range, whereas the followup mean score of the depressed treatment group had shifted into the nondepressed range. This finding is of some import when one considers the significant degree of depression reported in epilepsy (Hermann, 1979; Hermann and Stevens, 1980). One implication for future studies of the impact of SEE on depression would be to assess only patients above a specified cutoff score indicating depression. Despite lack of statistical significance regarding reduction in seizure frequency, results regarding
SEPULVEDA EPILEPSY EDUCATION the hypothesis that the treatment group would exhibit significantly greater improvement in medical self-management practices were particularly encouraging. Although no significant differences were found on the WPSI Medicine and Medical Management scale, differences on the SEE Hazards subscale, specifically designed to assess hazardous medical self-management practices, were highly significant. More important, the results of these self-report measures appear to be strengthened by the objective finding of significant and sustained improvement in AED blood level concentrations. The SEE program places heavy emphasis on compliance to gain the best possible seizure control. Despite the small sample size, the significant percentage change in treatment group blood levels appears to validate the SEE program’s effectiveness in increasing medication compliance. It is particularly significant that the blood level increase was maintained for months after the program. Moreover, none of the increased blood levels were in generally accepted toxic ranges, nor were there any reports of increase in toxic symptoms. Finally, despite a lack of statistically significant differences between groups on the WPSI scales, several trends in the expected direction were observed. The treatment group displayed trends toward improved emotional adjustment, improved interpersonal adjustment, improved vocational adjustment, improved adjustment to seizures, and improved overall psychosocial functioning. That the improvements appeared to continue over time, from immediate postassessment to 4-month followup is especially encouraging. In addition, the control group’s level of adjustment, as measured by the WPSI, appeared to decrease over the same period of time. The SEE program appears to offer a costeffective psychoeducational treatment approach in ameliorating some medical and psychosocial problems associated with epilepsy. The present study provides some initial data that address the concern of The Commission for the Control of Epilepsy and its Consequences (1978) that little or no research focuses on the delivery or effectiveness of services for persons with epilepsy. Although many results were not statistically signifcant, in comparison to the limited success of longer group treatment programs designed to treat psychosocial problems specifically (Tan and Bruni, 1986), the limited impact of a weekend seminar in alleviating psychosocial problems is not unexpected. One implication is that individual therapy may be necessary and more effective for some persons than group therapy. A second implication is that the most effective way to treat
81
psychosocial problems may be to use follow-up sessions or form local self-help groups that could expand on the treatment provided in shorter interventions such as the SEE program. However, the significant reduction in hazardous medical self-management practices, the significantly lower fear of death and brain damage, and the significant decrease in overall level of misinformation and misconceptions about epilepsy provide initially encouraging data regarding the efficacy of the SEE program. These significant results are particularly notable, in that a 2-day seminar would have to have strong long-term therapeutic effects to create statistically significant changes in a relatively small sample of subjects. Nevertheless, further controlled studies using larger samples are needed before broader, more conclusive statements can be made. Acknowledgment: I thank the Epilepsy Foundation of America for their interest and for providing partial financial support through a behavioral science fellowship.
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Mittan RJ. Fear of seizures. In: Whitman S , Hermann BP, eds. Psychopathology in epilepsy: social dimensions. New York: Oxford University Press, 1986:%121. O’Leary A. Self-efficacy and health. Behav Res Ther 1985;23: 437-5 1. Ozuna J. Psychosocial aspects of epilepsy. J Neurosurg Nursing 1979;4:242-6. Riddle MC. A strategy for chronic disease. Lancet l980;l: 183-6. Rodin EA, Shapiro HL, Lennox K. Epilepsy and life performance. Rehabil Lit 1977;38:3&9. Scott DF. Psychiatric aspects of epilepsy. Br J Psychiatry 1978; 132:417-30. Sherer M, Maddux JE. The self-efficacy scale: construction and validation. Psychol Rep 1982;51:66%71. Sherwin I. Neurobiological basis of psychopathology associated with epilepsy. In Sands H, ed. Epilepsy: a handbook for the mental health professional. New York: BrunnedMazel, 1982:77-%. Spielberger CD, Gorsuch RL, Lushene RE. Manual for the stare-trait anxiety inventory (self-evaluation questionnaire). Palo Alto, CA: Consulting Psychologists Press, 1970. Tan SY. Psychosocial functioning of epileptic patients referred for psychological intervention. In: Parsonage M, Grant RHE, Craig AG, Ward AA Jr, eds. Advances in epileptology: XIVrh epilepsy internarional symposium. New York: Raven Press, 1983:79-87. Tan SY. Psychosocial functioning of adult epileptic and MS patients and adult normal controls on the WPSI. J Clin Psychol 1986;42:528-34. Tan SY, Bruni J. Cognitive-behaviortherapy with adult patients with epilepsy: a controlled outcome study. Epilepsia 1986; 27:225-33. Taylor DC,McKinlay I. When not to treat epilepsy with drugs. Dev Med Child Neurol 1984;26822-33. Whitman S , Hermann BP, Gordon A. Psychopathology in epilepsy: how great is the risk? Biol Psychiatry 1984;19:213-36. Wright GN, ed. Epilepsy rehabilitation. Boston: Little, Brown,
tive de la comprthension globale de I’tpilepsie, une diminution significativede la peur des crises, et une diminution significative des pratiques mtdicales spontantes dangereuses. De plus, le dosage objectif des taux sanguins des mtdicarnents antitpileptiques a mis en tvidence une augmentation significative de la compliance au traitement dans le groupe traitt. (P. Genton, Marseille)
RESUMEN Utilizando un disedo controlado de 10s resultados, en este estudio se valora la eficacia del programa Sephlveda de Educaci6n en Epilepsia (SEE). El SEE consiste en un programa de tratamiento psico-educacional de dos dias de duraci6n que trata de proporcionar educaci6n mtdica y terapia psico-social. Se seleccionaron 38 pacientes semejantes en lo que respecta al tipo y frecuencia de 10s ataques y se asignaron aleatoriamente al grupo tratado (n = 20) y al grupo control en lista de espera (n = 18). Para medir 10s resultados se utilizaron 10s siguientes elementos: un test de 50 items verdaderos-falsos disenado especificamente para valorar el programa SEE; el Inventorio Psico-Social para Ataques de Washington; el Inventorio de Depresi6n de Beck; el Listado de Adjetivos de Depresi6n de Lubin; el Inventorio de Ansiedad de “State-Trait”; La Escala de Aceptaci6n de la Discapacidad y La Escala de Auto-Eficacia de Sherer. Se encontranron diferencias significativas entre 10s dos grupos en las tres subescalas m8s importantes del test de 10s 50 items verdaderosfalsos. El grupo tratado mostr6 un incremento significative en la comprensi6n global de la epilepsia, una reducci6n significativa con respecto al miedo a 10s ataques y una reducci6n significativa en las pr;lcticas mtdicas peligrosas de auto-control. AdemBs, la medida objetiva de niveles en sangre de medicaciones antiepiltpticas mostr6 que el grupo tratado tenia un incremento significativo de la fiabilidad en la administraci6n de medicarnentos. (A. Portera-Sbchez, Madrid)
1975.
R k S W Dans ce travail les auteurs ont tvalut I’efficacitt du programme d’tducation sur 1’Epilepsie de Sepulveda (EES), au moyen d’un protocole B finalitt contr6lte. L’EES est un programme de traitement psychdducatif de deux jours visant & fournir une Cducation mtdicale et un traitement psychosocial. Trente-huit patients ambulatoires, appairts pour le type et la frtquence des crises, ont t t t distributs au hasard entre un groupe traitement (n = 20) et un groupe liste d’attente (n = 18). Les principaux critkres d’tvaluation des rtsultats ont Ctt: un questionnaire sollicitant 50 rtponses vrai-faux, qui avait pour but d’tvaluer le programme d’EES, I’inventaire psychosocial des crises de Washington, I’inventaire de depression de Beck, la liste des adjectifs de depression de Lubin, I’inventaire d’anxittt “State-Trait”, I’tchelle d’acceptation du handicap, et I’tchelle d’auto-efficacitt de Sherer. Des dstrences signiikatives entre les deux groupes ont t t t constattes au niveau des trois principales sousCchelles du questionnaire B 50 rtponses vrai-faux. Dans le groupe traitt, on a constatt une augmentation significa-
Epilepsiu, Vol. 31, No. I , 1990
ZUSAMMENFASSUNG Die vorliegende Studie untersucht die Wirksamkeit des Sepulveda Epilepsie Erziehungsprogramms (SEE) unter Anwendung eines kontrollierten Erfolgsdesigns. Das SEE stellt ein zweitiigiges psychologisches Erziehungsprogramm dar, welches der Verbesserung medizinischer A u k k u n g und psychosozialer Therapie dient. 38 ambulante Patienten, die nach Anfallstyp und -gruppen gematcht wurden, wurden zufdlig einer Behandlungsgruppe (n = 20) oder Warteliste (n = l8), (Kontrollgruppe) zugeteilt. Unter Anwendung von Testverfahren wurde der Erfolg gemessen. Signifkante Unterschiede zwischen beiden Gruppen wurden gefunden: in 3 Subskalen des true-false-Tests (richtigfalsch-Test). Die Behandlungsgruppe bot einen signifikanten Anstieg im agemeinen Epilepsieversttindnis, eine signifikante Verminderung der Angst vor Anfallen und eine signifikante Abnahme von unkontrollierter medizinischer Selbstmedikation. Zusatzlich zeigten Blutspiegelmessungen einen signifikanten Anstieg der Medikations-Compliance. (C. G . Lipinski, Heidelberg-Neckargemiind)
Sepulveda Epilepsy Education: The Efficacy of a Psychoeducational Treatment Program in Treating Medical and Psychosocial Aspects of Epilepsy David C. Helgeson, *Robert Mittan, Sang-Yang Tan, and tSirichai Chayasirisobhon Graduate School of Psychology, Fuller Theological Seminary, Pasadena; *Sepulveda V A Medical Center and Department of Neurology, UCLA, Los Angeles; and fKaiser Permanente Medical Center, Anaheim, California, U.S.A.
Summary: The present study evaluated the efficacy of the Sepulveda Epilepsy Education program (SEE), using a controlled outcome design. SEE is a 2-day psychoeducational treatment program designed to provide medical education and psychosocial therapy. Thirty-eight outpatients, matched according to seizure type and frequency, were randomly assigned to treatment (n = 20) or waitinglist control (n = 18) groups. The major outcome measures used were a 50-item true-false test specifically designed to evaluate the SEE program, the Washington Psychosocial Seizure Inventory, the Beck Depression Inventory, Lubin’s Depression Adjective Checklist, the State-Trait
Anxiety Inventory, the Acceptance of Disability Scale, and Sherer’s Self-Efficacy Scale. Significant differences between the two groups were found on the three major subscales of the 50-item true-false test. The treatment group demonstrated a significant increase in overall understanding of epilepsy, a significant decrease in fear of seizures, and a significant decrease in hazardous medical self-management practices. In addition, an objective measure of blood levels of antiepileptic drugs (AEDs) showed the treatment group to have a significant increase in medication compliance. Key Words: Epilepsy-BehaviorSocial adjustment-CompliancePatient education.
Much epilepsy research has focused on understanding the neurologic mechanisms of seizures (e.g., Sherwin, 1982) and how to control seizures through use of antiepileptic drugs (AEDs) (Taylor and McKinlay, 1984). The importance of AEDs is clear since seizures can be completely controlled in >50% (Commission, 1978), and well controlled in 3 0 % of patients (Lechtenberg, 1984). Although the importance of seizure control through use of AEDs cannot be overestimated, the Commission for the Control of Epilepsy and its Consequences (1978) has asserted that patient ignorance and psychosocial problems are often more disabling than the seizures themselves. High rates of psychosocial problems among individuals with epilepsy have been reported (e.g., Wright, 1975; Rodin et al., 1977; Scott, 1978; Ozuna, 1979; Dodrill et al., 1980, 1984; Fraser, 1980; Dodrill and Batzel, 1981; Tan, 1983, 1986;
Whitman et al., 1984). Serious emotional problems that may result are severe loss of self-esteem, anxiety and depression, withdrawal from society, and a subsequent inability to interact appropriately with others. Even persons who appear to adjust successfully to social problems must continually cope with the fears and uncertainties imposed by epilepsy. No matter how well-controlled a person’s seizures are, the fear of seizures may always be present, for e p ilepsy is more a threat than an active condition (Lechtenberg, 1984). A recent study of 373 epilepsy patients indicated that many harbor fears of death and brain damage and suggested that these fears may be a leading cause of psychosocial impairment (Mittan, 1986). Dealing with all these various psychological and sociologic factors is crucial to making a positive adjustment to epilepsy. Such emotional factors may become the most important determinants of motivation to carry out a medication regimen and adapt to the more or less altered situation of life (Laaksonen, 1983). Yet, AED noncompliance continues to be a foremost cause of seizure exacerbation (Barry, 1982). At least one third of patients do not
Received June 1988; revision accepted March 1989. Address correspondence and reprint requests to D. C. Helgeson at Graduate School of Psychology, Fuller Theological Seminary, 180N.Oakland Ave., Pasadena, CA 91101-1790, U.S.A.
75
76
D . C . HELGESON ET AL.
achieve seizure control because of lack of AED compliance (Commission, 1978). The main reasons are probably lack of instruction, misinterpretation of instructions, or lack of understanding. The Commission for the Control of Epilepsy and its Consequences (1978) clearly stated the need for understanding and knowledge: “The understanding that an individual has about any disability is directly related to the success the individual has in coping with the disability” (p. 133). Patients, therefore, need to accept primary responsibility for coping with their disorder and maintaining their health (Riddle, 1980). The Commission also stated that almost no research is being done on the delivery or effectiveness of services for people with epilepsy. The purpose of this study was to evaluate the effectiveness of a new therapeutic program: Sepulveda Epilepsy Education (SEE). This 2-day patient/ family treatment program was designed to meet a broad range of medical education and psychosocial treatment needs economically. The SEE program uses a psychoeducational treatment approach to deliver psychosocial help and health education. In accordance with the Commission’s findings, the underlying belief behind SEE is that an adequate understanding of epilepsy is essential to effective coping with the disorder. Preliminary results from a sample of 40 SEE programs presented across the United States and in New Zealand have been obtained through evaluation of 488 participants, using 50-item pre- and posttests (Mittan, 1985). Although initial results appear encouraging, they involve only a pretest and immediate posttest, without use of appropriate control groups or follow-up evaluations. The need for better outcome studies using control groups (e.g., waiting list andor attention placebo groups) has been underscored by findings reported by Tan and Bruni (19861, in a controlled outcome study of group cognitive-behavior therapy for reducing psychosocial difficulties and seizures in adult epilepsy patients. This study was designed to evaluate the effectiveness of the SEE program with the use of a number of objective paper-and-pencil inventories. We used a controlled outcome design with a treatment group and a waiting-list control group. In addition to the pretest and immediate posttest measures, we included a 4-month follow-up to assess long-term effects of SEE. The major hypotheses were that the treatment group would show an increased understanding of epilepsy, a decrease in fear of seizures, and significantly more improvement in medical selfmanagement, blood AED levels, depression and anxiety, self-efficacy, and greater acceptance of
Epilepsia. Vol. 31. No. I . 1990
their epilepsy as compared with the waiting-list control group. METHODS Participants and setting One hundred twenty adult epilepsy outpatients at Kaiser Permanente Medical Care Program ClinicBellflower, California, U.S.A. were asked to participate in the study. The 100 patients who agreed to participate were matched on the variables of seizure type and frequency and were randomly assigned to either treatment or waiting-list control group. All patient-participants were diagnosed with epilepsy and were receiving AEDs. Mentally retarded, demented, or psychotic patients were not included. Of the 50 patients assigned to the treatment group, 23 attended the weekend SEE program and completed the preassessment questionnaires. Of 50 patients assigned to the waiting-list control group, 20 completed preassessment questionnaires. At 4-month follow-up, 1 of the 23 treatment participants was found to have attended portions of a previous SEE program, whereas 2 others had attended only 1 day and were excluded from the study. Of the 20 waiting-list control group participants, 18 returned follow-up questionnaires. The final sample included 38 patients, 20 in the treatment group and 18 in the waiting-list control group. Treatment programs were conducted on two separate weekends 4 months apart. The first weekend program was for the treatment group; the waitinglist control group was invited to attend the second weekend program conducted 4 months later. Table 1 shows demographic characteristics of the two groups. Statistical analyses revealed no significant differences among the two groups on any of the variables outlined in Table 1.
Measures of outcome Anxiety and depression Level of anxiety was assessed by the State-Trait Anxiety Inventory, State Anxiety Scale STAI (AState), developed by Spielberger et al. (1970). Depression was assessed as both trait and state. Stable traitlike properties of depression were evaluated by the Beck Depression Inventory (BDI, Beck et al. 1961). Transient statelike depressive qualities were assessed by Lubin’s Depression Adjective Check List (DACL, Lubin, 1967). Washington Psychosocial Seizure Inventory ( WPSI)
The WPSI, designed specifically for persons with epilepsy (Dodrill et al., 1980), was used to measure
SEPULVEDA EPILEPSY EDUCATION
77
TABLE 1. Demographic characteristics of treatment and control groups Variable Sex F M Mean age, yr (SD) Mean education, yr (range) Mean age at onset of seizure disorder, yr (SD) Mean duration of seizure disorder, yr (SD) Mean seizure frequencyho at time of preassessment (SD) Seizure type (no. of patients) Generalized tonic-clonic Complex-partial Complex-partial secondarily generalized Partial sensory Partial motor Etiology Idiopathic Structural malformation Closed head injury CVA CNS infection EEG Abnormal Epileptiform pattern
Control group
Treatment group
14
14
4 38.56 (10.67) 13.44 (SD = 2.33) (8-18)
6 36.15 (12.81) 13.65 (SD = 2.35) (11-20)
23.39 (16.14)
18.80 (13.22)
15.44 (11.14)
17.40 (10.78)
2.05 (4.73)
2.47 (3.98)
6 4
6 6
6 0
7
1
0
13 I 2
16
1
1
3 0 0
1 1
9 7
11
7
~
CVA, cerebrovascular accident; CNS, central nervous system.
psychological and social problems. The WPSI consists of family background, emotional adjustment, interpersonal adjustment, vocational adjustment, financial status, adjustment to seizures, medicine and medical management, and overall psychosocial functioning scales. Coping with epilepsy The Acceptance of Disability (AD) scale developed by Linkowski (1971) was used as a self-report measure of coping with epilepsy. AD primarily measures the extent to which a person is able to deemphasize the negative aspects of disability and emphasize positive assets and abilities. For this study AD was adapted by replacing the term “disability” in the wording of the text items with the term “epilepsy. ”
Self-efficacy Sherer’s (1982) Self-Efficacy Scale was used to assess self-efficacy expectations, both generally and socially. Self-efficacy theory (Bandura, 1977) proposes that expectations of personal mastery and success exert a tremendous influence on psychosocia1 functioning. Perceived self-efficacy expectations have also been shown to play a significant role in adherence to preventive health programs (O’Leary, 1985), and may have impact on adherence to an AED regimen.
Epilepsy knowledge and medical management All patients received a SO-item true-false questionnaire (Mittan, 1986)designed to measure knowledge about epilepsy and assess medical selfmanagement practices. Embedded in this inventory was a 15-item “fear of seizures” scale designed to assess patients’ fears of death and brain damage due to seizures. Medical management was assessed by recording the following objective measures before and after the 4-month period following SEE participation: (a) number of prescribed AEDs, (b) AED blood level, and (c) seizure frequency.
Procedure After assignment to either the treatment or waiting-list control group, informed consent was obtained. Preassessment was conducted by paperand-pencil tests, immediately before program participation. The waiting-list control group had been mailed the paper-and-pencil measures earlier in the week, together with completion instructions. Immediately after SEE participation, the treatment group again completed the assessment battery. Both groups completed the battery again at 4-month follow-up. Paper-and-pencil inventory results were analyzed with repeated-measures analyses of variance (ANOVA), allowing comparison between treatment
Epilepsia, Vol. 31, No.1 , 1990
D . C . HELGESON ET AL.
78
ANOVA yielded significant findings, both in terms of main effects of groups and time, and for interaction of the groups x time, which is the critical statistic that shows whether changes in the treatment groups can be considered significant over and above changes seen in both groups due to time passage. Significant groups x time interactions were obtained on the SEE fears subscale, the hazardous medical self-management subscale, and the total score, which measures the extent of patient's misinformation and misconceptions regarding epilepsy. As compared with the control group, the treatment group showed a significant decrease in level of fear of death and brain damage due to seizures, F( 1,36) = 7.49, p < 0.009. Also, in addition, as compared to the control group, the treatment group showed a significant decrease in hazardous medical selfmanagement practices, F(1,36) = 29.67, p < O.OOO1. Moreover, the group attending SEE also demonstrated a significant decrease in overall level of misinformation and misconceptions regarding epilepsy, F(1,36) = 39.74, p < O.OOO1, as compared with the control group.
and waiting-list control group across time, from preassessment to 4-month follow-up. Repeated measures ANOVA was used to analyze monthly seizure frequency and percentage change in blood levels. Immediate treatment program effects were analyzed by conducting a series of paired t tests for the treatment group. RESULTS
At preassessment, ANOVA showed few significant differences among the two groups on any of the dependent measures. The only significant differences between the two groups at preassessment were on DACL and STAI (A-State). The control group scored significantly higher on DACL, F( 1, 36) = 7.02, p < 0.012, and on STAI (A-State), F(1, 36) = 8.69, p < 0.006. Higher scores on these measures indicate higher levels of depression and anxiety, respectively.
Repeated-measuresANOVA for paper-and-pencil tests Table 2 shows means and SDs of the paperand-pencil tests. A series of repeated-measures
TABLE 2. Outcome scores (mean
+ SD)at preassessment and at 4-month follow-up with F statistics F Score ~
Control group
Treatment group F'reassessment
Follow-up (4 mo)
Interaction effect (groups x time)
Main effect (time)
Main effect (groups)
3.17 (2.78)
2.25 (1.41)
0.85 (1.27)
7.499
4.556
4.4@
6.67 (2.61)
7.67 (1.97)
6.85 (2.56)
3.2 (1.61)
29.67'
11.53"
13.52d
15.39 (4.95) 240.67 (43.23) 10.56 (9.4) 10.61 (6.23) 42.83 (9.95)
14.33 (5.83) 243.33 (50.47) 11.06 (10.89) 8.22 (4.31) 39.22 (15.3)
7.05 (2.76) 258.45 (25.88) 6.25 (4.19) 8 (4.54) 36.45 (8.84)
39.74' 0.726 6.34 2.58
24.W 2.51 0.385 0.163 0.014
10.76" I .07 2.65 2.90 4.03
61.70 (12.95) 19.75 (5.85)
1.32 4.58
1.74 0.490
0.017
0.095
0.01 0.852 0.003
~
Scale SEE 50-item questionnaire Fears of death and brain damage due to seizures subscale Hazardous medical selfmanagement practices subscale Total score = overall misinformation and misconceptions Acceptance of Disability Beck Depression Inventory Depression Adjective Checklist State-Trait Anxiety Inventory Sherer's Self-Efficacy Scale General Social Washington Psychosocial Seizure Inventory (WPSI) Family Background Emotional Adjustment Interpersonal Adjustment Vocational Adjustment Financial Status Adjustment to Seizures Medicine and Medical Management Overall Psychosocial Functioning Critical Items No. of blank items Lie items Ram items Seizure frequency a
Preassessment
Follow-up (4 mo)
2.94 (3.52)
60 (9.59) 19 (4.86)
63.89 (10.06) 21.22 (4.52)
61.35 (11.25) 20.75 (4.89)
2.39 (2.17) 12.94 (6.47) 5.5 (5.07) 4.17 (3.4) 2.89 (1.94) 5.11 (3.77)
2.5 (1.86) 13.06 (7.86) 5.61 (5.07) 4.39 (4.03) 3.5 (2.41) 4.17 (4.05)
1.75 (1.77) 12.60 (5.03) 5.15 (4.51) 4.10 (3.56) 2.3 (2.03) 4.95 (2.93)
1.7 (1.9)
1
0.009
5 (4.3) 3.7 (2.94) 2.3 (2.43) 2.95 (2.33)
0.065 0.595 1.41 1.31
1.27 10.58"
1.60 0.467 0.11 0.127 1.77 0.505
11 (4.38)
0.998
0.068
2.67 (2.14)
2.11 (1.97)
2.00 (1.78)
2.15 (2.16)
1.32
0.36
0.295
17.28 (10.63) 6.83 (5.62) 0.72 (1.67) 2.22 (1.87) 2.28 (3.77) 2.14 (4.72)
17.61 (13.11) 6.78 (6.56) 0.44 ( I .2) 2.06 (1.63) 1.39 (1.46) 2.05 (4.73)
16.35 (7.48) 5.9 (3.31) 0.4 (1.19) 2.3 (1.92) 1.45 (1.4) 2.47 (3.98)
13.65 (6.7) 4.25 (2.85) 0.2 (0.52) 2.25 ( I 5 9 ) 1.45 (1.57) 2.32 (4.01)
1.84 2.19 0.02
0.265 2.77 0.761
0.044
0.144
1.03 0.129
0.926 2.12
0.69 I .43 I .02 0.075 0.514 0.045
p < 0.01; bp < 0.05; 'p < O.OOO1; "p < 0.001.
Epilepsia, Vol. 31. No. 1. 1990
14.05 (4.08) 249.15 (24.4) 8.05 (5.03) 6.45 (3.1) 33.65 (9.26)
SEPULVEDA EPILEPSY EDUCATION
Significant main effects of time and groups were also found on the above scales. Significant main effects of time were apparent on the SEE fears subscale, F( 1,36) = 4.55, p < 0.04; the hazardous medical self-management subscale, F( 1,36) = 1133, p < 0.002; and the total score, F(1,36) = 24.9, p < 0.0001. The significant main effects of groups were: On the SEE fears subscale, F( 1,36) = 4.4, p < 0.04; on the hazardous medical self-management subscale, F(1,36) = 13.52, p < 0.001; and on the total score, F(1,36) = 10.76, p < 0.002. Seizure frequency data The repeated-measures ANOVA performed on patient reported monthly seizure frequency data yielded no significant differences between the treatment and waiting list control group from preassessment to follow-up (Table 2). Preassessment scores were based on average monthly seizure frequency during the 4 months before the SEE program, and follow-up scores were based on average monthly seizure frequency during the 4 months after the SEE program. Paired t test results for the treatment group Although our primary interest was in long-term effects of the SEE program, we also investigated immediate effects. Due to the intensive type of intervention involved, and the proximity in time between the pre- and immediate postassessment (2day), control group subjects were not asked to complete the immediate postassessment. They had neither attended the SEE program nor participated in any comparable intervention; hence, they were not expected to show significant changes in the 2day interval. Therefore, paired t tests were performed to assess only the treatment group’s changes from pre- to immediate postassessment. In addition to the long-term decrease in hazardous medical self-management practices, fear of death and brain damage, and overall misinformation and misconceptions about epilepsy, the treatment group, by within-group analyses, also showed a significant decrease in level of depression from pre- to immediate postassessment, as measured by the BDI (t = 3.76, p < 0.0007), and a significant increase in acceptance of epilepsy, as measured by the AD scale (t = 2.28, p < 0.017). The treatment group also showed significant improvement in adjustment to seizures from pre- to immediate postassessment ( t = 2.54, p < 0.009), as measured by the WPSI Adjustment to Seizures scale. This notable immediate improvement in adjustment to seizures appeared to be maintained across time; the withingroup analysis showed a significant improvement from preassessment to 4-month follow-up (t = 3.18,
79
p < 0.002). The only other significant within-group change was the WPSI Overall Psychosocial Functioning scale, on which significant improvement was demonstrated from pretest to follow-up (t = 2.33, p < 0.016). This observation is especially notable, since this change indicates a trend toward continuing improvement in a 4-month period. In addition to the statistically significant withingroup changes described, a number of important trends were observed. First, on the WPSI Emotional Adjustment scale, the treatment group’s mean scores decreased from 12.6 to 11.2 to 11 across the three assessment periods. There was a trend for improvement in emotional adjustment from pre- to immediate postassessment ( t = 1.58, p < 0.065). There was a trend toward continuing improvement in emotional adjustment in the 4-month follow-up (t = 1.68, p < 0.055). On the WPSI Interpersonal Adjustment and Vocational Adjustment scales, the treatment group’s scores suggested not only immediate improvement, but continuing improvement at 4-month follow-up. In relation to the treatment group’s apparent improvement over time on the WPSI measures, the control group’s scores indicated trends toward further decreases in adjustment levels in a 4-month period. Percentage of change in blood levels We hypothesized that the treatment group would show improvement in medical self-management that would be reflected in improved AED compliance. We predicted that this would be shown not only in self-report measures, but also in the objective measure of blood AED levels. The number of participants involved in this part of the analysis was 26 (9 control and 17 treatment). Medication compliance was evaluated by comparing the percentage change scores in blood AED levels from prestudy to follow-up. The treatment group showed significantly increased compliance by ANOVA, F( 1,24) = 4.18, p < 0.05. Mean percentage change at 4-month treatment group followup was a 70% increase in blood levels. Mean percentage decrease for the control group at follow-up was 18% (Fig. 1). Percentage change scores were calculated by follow-up blood level minus preassessment blood level divided by preassessment blood level and multiplied by 100 to yield percentages. Depressed versus nondepressed patients We hypothesized that the treatment group would feel less depressed than the waiting-list control group. However, mean preassessment BDI scores for both treatment and waiting-list control groups were below cutoff scores suggestive of depression. Therefore, to expect the treatment group to imEpilepsia, Vol. 31, No. I , 1990
D.C. HELGESON ET AL.
80
treatment
FIG. 1. Percentage change in blood levels from preassessment to follow-up.
I----
control
10
-10
- 30 followup 4 month
Pr‘e
PLASMA LEVELS
prove on this measure was deemed inappropriate. Consequently, a subgroup of patients considered “depressed” was identified (BDI scores 3 lo), and a subsequent series of repeated-measures ANOVA was performed. In the larger “nondepressed” sample, the control group’s mean BDI depression score increased from 10.56 at preassessment to 11.06 at follow-up. The treatment group’s mean depression score decreased from 8.05 to 6.25, but ANOVA identified no statistically significant difference between the two groups. When only depressed patients were included in ANOVA, the treatment group’s BDI scores decreased from 13.57 at preassessment to 8.14 at 4-month follow-up, moving from the depressed to the nondepressed range. The control group’s mean BDI scores decreased from 16.11 to 14.67, but remained in the depressed range. Thus, there appears to be a trend in the expected direction of less depression for the treatment group, but the depressed subgroup consisted of only 16 patients (9 control and 7 treatment), and therefore was too small to achieve statistically significant results. DISCUSSION Results of our controlled outcome study provide limited but encouraging support for the efficacy of the SEE program in treating medical and psychosocial aspects of epilepsy. In light of the somewhat small sample size, only a few significant main outcome measure results were obtained: In comparison to the control group, the treatment group showed a significant decrease in level of fear of death and brain damage due to seizures, a significant decrease in hazardous medical self-manageEpilepsia, Vol. 31, N o . 1. 1990
ment practices, and a significant decrease in overall level of misinformation and misconceptions regarding epilepsy. On the other hand, the SEE program had to produce relatively large and sustained treatment effects for significance to be reached with such a limited sample size across a 4-month period. Other measures used to evaluate the efficacy of SEE in alleviating psychosocial problems revealed less impact. For example, BDI data failed to support the hypothesis that treatment group patients would be significantly less depressed after participation. There was a significant within-group decrease in depression immediately after SEE. However, although the 4-month follow-up mean score suggested a trend in the direction of less depression, statistical significance was not achieved. A possible explanation for the lack of impact in lessening depression is that both the treatment and control group consisted of patients who were not clinically depressed. Therefore, it was unrealistic to expect nondepressed patients to be even less depressed as a result of attending a weekend seminar. However, a post hoc analysis of depressed patients suggested clinically significant change; i.e., the follow-up mean score of the depressed control group was still in the depressed range, whereas the followup mean score of the depressed treatment group had shifted into the nondepressed range. This finding is of some import when one considers the significant degree of depression reported in epilepsy (Hermann, 1979; Hermann and Stevens, 1980). One implication for future studies of the impact of SEE on depression would be to assess only patients above a specified cutoff score indicating depression. Despite lack of statistical significance regarding reduction in seizure frequency, results regarding
SEPULVEDA EPILEPSY EDUCATION the hypothesis that the treatment group would exhibit significantly greater improvement in medical self-management practices were particularly encouraging. Although no significant differences were found on the WPSI Medicine and Medical Management scale, differences on the SEE Hazards subscale, specifically designed to assess hazardous medical self-management practices, were highly significant. More important, the results of these self-report measures appear to be strengthened by the objective finding of significant and sustained improvement in AED blood level concentrations. The SEE program places heavy emphasis on compliance to gain the best possible seizure control. Despite the small sample size, the significant percentage change in treatment group blood levels appears to validate the SEE program’s effectiveness in increasing medication compliance. It is particularly significant that the blood level increase was maintained for months after the program. Moreover, none of the increased blood levels were in generally accepted toxic ranges, nor were there any reports of increase in toxic symptoms. Finally, despite a lack of statistically significant differences between groups on the WPSI scales, several trends in the expected direction were observed. The treatment group displayed trends toward improved emotional adjustment, improved interpersonal adjustment, improved vocational adjustment, improved adjustment to seizures, and improved overall psychosocial functioning. That the improvements appeared to continue over time, from immediate postassessment to 4-month followup is especially encouraging. In addition, the control group’s level of adjustment, as measured by the WPSI, appeared to decrease over the same period of time. The SEE program appears to offer a costeffective psychoeducational treatment approach in ameliorating some medical and psychosocial problems associated with epilepsy. The present study provides some initial data that address the concern of The Commission for the Control of Epilepsy and its Consequences (1978) that little or no research focuses on the delivery or effectiveness of services for persons with epilepsy. Although many results were not statistically signifcant, in comparison to the limited success of longer group treatment programs designed to treat psychosocial problems specifically (Tan and Bruni, 1986), the limited impact of a weekend seminar in alleviating psychosocial problems is not unexpected. One implication is that individual therapy may be necessary and more effective for some persons than group therapy. A second implication is that the most effective way to treat
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psychosocial problems may be to use follow-up sessions or form local self-help groups that could expand on the treatment provided in shorter interventions such as the SEE program. However, the significant reduction in hazardous medical self-management practices, the significantly lower fear of death and brain damage, and the significant decrease in overall level of misinformation and misconceptions about epilepsy provide initially encouraging data regarding the efficacy of the SEE program. These significant results are particularly notable, in that a 2-day seminar would have to have strong long-term therapeutic effects to create statistically significant changes in a relatively small sample of subjects. Nevertheless, further controlled studies using larger samples are needed before broader, more conclusive statements can be made. Acknowledgment: I thank the Epilepsy Foundation of America for their interest and for providing partial financial support through a behavioral science fellowship.
REFERENCES Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psycho1 Rev 1977;84:191-215. Barry K. The health education needs of the adult with epilepsy. Rehabil Nursing 1982;7:3&3. Beck AT, Ward CH, Mendelson M, Mock JE, Erbough JK. An inventory for measuring depression. Arch Gen Psychiatry 1%1;5:4&7. Commission for the Control of Epilepsy and its Consequences. Plan for nationwide action on epilepsy, vols. I and 11, part 2). DHEW Publication No. NIH 78-276. Washington, D.C.: U.S. Government Printing Ofice, 1978. Dodrill CB, Batzel LW. Patterns of psychosocial problems in chronic epilepsy. In: Dam M, Gram L, Penry JK, eds. Advances in epileptology: XIIth epilepsy international symposium. New York: Raven Press, 1981:253-7. Dodrill CB, Batzel LW, Queisser HR, Temkin NR. An objective method for the assessment of psychological and social problems among epileptics. Epilepsia 1980;21:123-35. Dodrill CB, Beier R, Kasparick M, Tacke I, Tacke U, Tan SY. Psychosocial problems in adults with epilepsy: comparison of findings from four countries. Epilepsia 1984;25:176-83. Fraser RT. Vocational aspects of epilepsy. In: Hermann BP, ed. A multidisciplinary handbook of epilepsy. Springfield, IL: Charles C Thomas, 1980:7&105. Hermann BP. Psychopathology in epilepsy and learned helplessness. Med Hypothesis 1979;5:723-9. Hermann BP, Stevens JR. Interictal behavioral correlates of the epilepsies. In: Hermann BP, ed. A multidisciplinary book of epilepsy. Springfield, IL: Charles C Thomas, 1980:272-307. Laaksonen R. The patient with recently diagnosed epilepsypsychological and sociological aspects. Acta Neurol Scand 1983;67 (SUPPI93):52-9. Lechtenberg R. Epilepsy and the family. Cambridge, MA: Harvard University Press, 1984. Linkowski DC. A scale to measure acceptance of disability. Rehabil Counseling Bull 1971;14:23644. Lubin B. Depression adjective checklist (form D ) . San Diego: Consulting Psychologists Press, 1%7. Mittan RJ. Sepulveda Epilepsy Education (SEE): A new technique for psychosocial treatment in epilepsy. Paper presented at American Epilepsy Society Annual Meeting, New York, New York, December 1985. Epilepsia. Vol. 31, No. I , 1990
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Mittan RJ. Fear of seizures. In: Whitman S , Hermann BP, eds. Psychopathology in epilepsy: social dimensions. New York: Oxford University Press, 1986:%121. O’Leary A. Self-efficacy and health. Behav Res Ther 1985;23: 437-5 1. Ozuna J. Psychosocial aspects of epilepsy. J Neurosurg Nursing 1979;4:242-6. Riddle MC. A strategy for chronic disease. Lancet l980;l: 183-6. Rodin EA, Shapiro HL, Lennox K. Epilepsy and life performance. Rehabil Lit 1977;38:3&9. Scott DF. Psychiatric aspects of epilepsy. Br J Psychiatry 1978; 132:417-30. Sherer M, Maddux JE. The self-efficacy scale: construction and validation. Psychol Rep 1982;51:66%71. Sherwin I. Neurobiological basis of psychopathology associated with epilepsy. In Sands H, ed. Epilepsy: a handbook for the mental health professional. New York: BrunnedMazel, 1982:77-%. Spielberger CD, Gorsuch RL, Lushene RE. Manual for the stare-trait anxiety inventory (self-evaluation questionnaire). Palo Alto, CA: Consulting Psychologists Press, 1970. Tan SY. Psychosocial functioning of epileptic patients referred for psychological intervention. In: Parsonage M, Grant RHE, Craig AG, Ward AA Jr, eds. Advances in epileptology: XIVrh epilepsy internarional symposium. New York: Raven Press, 1983:79-87. Tan SY. Psychosocial functioning of adult epileptic and MS patients and adult normal controls on the WPSI. J Clin Psychol 1986;42:528-34. Tan SY, Bruni J. Cognitive-behaviortherapy with adult patients with epilepsy: a controlled outcome study. Epilepsia 1986; 27:225-33. Taylor DC,McKinlay I. When not to treat epilepsy with drugs. Dev Med Child Neurol 1984;26822-33. Whitman S , Hermann BP, Gordon A. Psychopathology in epilepsy: how great is the risk? Biol Psychiatry 1984;19:213-36. Wright GN, ed. Epilepsy rehabilitation. Boston: Little, Brown,
tive de la comprthension globale de I’tpilepsie, une diminution significativede la peur des crises, et une diminution significative des pratiques mtdicales spontantes dangereuses. De plus, le dosage objectif des taux sanguins des mtdicarnents antitpileptiques a mis en tvidence une augmentation significative de la compliance au traitement dans le groupe traitt. (P. Genton, Marseille)
RESUMEN Utilizando un disedo controlado de 10s resultados, en este estudio se valora la eficacia del programa Sephlveda de Educaci6n en Epilepsia (SEE). El SEE consiste en un programa de tratamiento psico-educacional de dos dias de duraci6n que trata de proporcionar educaci6n mtdica y terapia psico-social. Se seleccionaron 38 pacientes semejantes en lo que respecta al tipo y frecuencia de 10s ataques y se asignaron aleatoriamente al grupo tratado (n = 20) y al grupo control en lista de espera (n = 18). Para medir 10s resultados se utilizaron 10s siguientes elementos: un test de 50 items verdaderos-falsos disenado especificamente para valorar el programa SEE; el Inventorio Psico-Social para Ataques de Washington; el Inventorio de Depresi6n de Beck; el Listado de Adjetivos de Depresi6n de Lubin; el Inventorio de Ansiedad de “State-Trait”; La Escala de Aceptaci6n de la Discapacidad y La Escala de Auto-Eficacia de Sherer. Se encontranron diferencias significativas entre 10s dos grupos en las tres subescalas m8s importantes del test de 10s 50 items verdaderosfalsos. El grupo tratado mostr6 un incremento significative en la comprensi6n global de la epilepsia, una reducci6n significativa con respecto al miedo a 10s ataques y una reducci6n significativa en las pr;lcticas mtdicas peligrosas de auto-control. AdemBs, la medida objetiva de niveles en sangre de medicaciones antiepiltpticas mostr6 que el grupo tratado tenia un incremento significativo de la fiabilidad en la administraci6n de medicarnentos. (A. Portera-Sbchez, Madrid)
1975.
R k S W Dans ce travail les auteurs ont tvalut I’efficacitt du programme d’tducation sur 1’Epilepsie de Sepulveda (EES), au moyen d’un protocole B finalitt contr6lte. L’EES est un programme de traitement psychdducatif de deux jours visant & fournir une Cducation mtdicale et un traitement psychosocial. Trente-huit patients ambulatoires, appairts pour le type et la frtquence des crises, ont t t t distributs au hasard entre un groupe traitement (n = 20) et un groupe liste d’attente (n = 18). Les principaux critkres d’tvaluation des rtsultats ont Ctt: un questionnaire sollicitant 50 rtponses vrai-faux, qui avait pour but d’tvaluer le programme d’EES, I’inventaire psychosocial des crises de Washington, I’inventaire de depression de Beck, la liste des adjectifs de depression de Lubin, I’inventaire d’anxittt “State-Trait”, I’tchelle d’acceptation du handicap, et I’tchelle d’auto-efficacitt de Sherer. Des dstrences signiikatives entre les deux groupes ont t t t constattes au niveau des trois principales sousCchelles du questionnaire B 50 rtponses vrai-faux. Dans le groupe traitt, on a constatt une augmentation significa-
Epilepsiu, Vol. 31, No. I , 1990
ZUSAMMENFASSUNG Die vorliegende Studie untersucht die Wirksamkeit des Sepulveda Epilepsie Erziehungsprogramms (SEE) unter Anwendung eines kontrollierten Erfolgsdesigns. Das SEE stellt ein zweitiigiges psychologisches Erziehungsprogramm dar, welches der Verbesserung medizinischer A u k k u n g und psychosozialer Therapie dient. 38 ambulante Patienten, die nach Anfallstyp und -gruppen gematcht wurden, wurden zufdlig einer Behandlungsgruppe (n = 20) oder Warteliste (n = l8), (Kontrollgruppe) zugeteilt. Unter Anwendung von Testverfahren wurde der Erfolg gemessen. Signifkante Unterschiede zwischen beiden Gruppen wurden gefunden: in 3 Subskalen des true-false-Tests (richtigfalsch-Test). Die Behandlungsgruppe bot einen signifikanten Anstieg im agemeinen Epilepsieversttindnis, eine signifikante Verminderung der Angst vor Anfallen und eine signifikante Abnahme von unkontrollierter medizinischer Selbstmedikation. Zusatzlich zeigten Blutspiegelmessungen einen signifikanten Anstieg der Medikations-Compliance. (C. G . Lipinski, Heidelberg-Neckargemiind)
