Clinically important change in quality of life in epilepsy.

BACKGROUND: Health related quality of life (HRQOL) is increasingly recognised as an important outcome in epilepsy. However, interpretation of HRQOL data is difficult because there is no agreement on what constitutes a clinically important change in the scores of the various instruments. OBJECTIVES: To determine the minimum clinically important change, and small, medium, and large changes, in broadly used epilepsy specific and generic HRQOL instruments. METHODS: Patients with difficult to control focal epilepsy (n = 136) completed the QOLIE-89, QOLIE-31, SF-36, and HUI-III questionnaires twice, six months apart. Patient centred estimates of minimum important change, and of small, medium, and large change, were assessed on self administered 15 point global rating scales. Using regression analysis, the change in each HRQOL instrument that corresponded to the various categories of change determined by patients was obtained. The results were validated in a subgroup of patients tested at baseline and at nine months. RESULTS: The minimum important change was 10.1 for QOLIE-89, 11.8 for QOLIE-31, 4.6 for SF-36 MCS, 3.0 for SF-36 physical composite score, and 0.15 for HUI-III. All instruments differentiated between no change and minimum important change with precision, and QOLIE-89 and QOLIE-31 also distinguished accurately between minimum important change and medium or large change. Baseline HRQOL scores and the type of treatment (surgical or medical) had no impact on any of the estimates, and the results were replicated in the validation sample. CONCLUSIONS: These estimates of minimum important change, and small, medium, and large changes, in four HRQOL instruments in patients with epilepsy are robust and can distinguish accurately among different levels of change. The estimates allow for categorisation of patients into various levels of change in HRQOL, and will be of use in assessing the effect of interventions in individual patients.

Measuring quality of life in epilepsy surgery patients.

Treatment of chronic conditions often entails trade-offs between benefits and risks or side effects. This is of particular importance in epilepsy. Consequently, assessment of effectiveness must incorporate this trade-off as perceived by the recipient of the intervention, ie., the patient. Measurement of health related quality of life (HRQOL) aims at capturing such patient-centred effects of therapy. Conceptual aspects of HRQOL are described and issues relevant to outcomes of epilepsy surgery are addressed. Finally, practical aspects of measurement in the context of epilepsy surgery are discussed.

Psychological adjustment to success and to failure following epilepsy surgery.

Treatment-refractory epilepsy can directly impair psychological adjustment and quality of life. Epilepsy surgery is viewed by the patient as a stressful life event, arrived at after extensive deliberation. It is accompanied by expectations and anxiety for patients and their families. We suggest that the success of epilepsy surgery (as reflected by patient-perceived impact on quality of life) depends not only on reduced seizure frequency, but on personality factors and psychosocial issues. This paper reviews our research on these factors, along with suggestions for psychological assessment (of quality of life, and of personality) and psychological treatment. Studies of quality of life in patients undergoing temporal lobectomy are also examined. Finally, factors leading to the perception of "failed" epilepsy surgery are considered, along with suggested ways to manage such cases.

Moderators of the effect of preoperative emotional adjustment on postoperative depression after surgery for temporal lobe epilepsy.

PURPOSE: Other outcome measures besides seizure control must be considered when assessing the benefit of epilepsy surgery. We investigated the effect of preoperative psychosocial adjustment on postoperative depression in epilepsy patients followed up prospectively for 2 years after temporal lobectomy. METHODS: The Washington Psychosocial Seizure Inventory (WPSI) evaluated psychosocial functioning; the Centre for Epidemiological Studies Depression Scale (CES-D) measured depression. Both were completed at baseline and follow-up. RESULTS: Follow-up occurred in 39 temporal lobectomy patients at 2 years after surgery. Greatest improvement in depression scores was limited to patients with good seizure outcomes (seizure free, or marked reduction in seizure frequency), and seizure outcome was a significant predictor of postoperative depression. Despite this, preoperative scores on the emotional adjustment scale of the WPSI were most highly correlated with depression 2 years after surgery. To clarify this relation, moderated hierarchic regression suggested that good preoperative emotional adjustment (WPSI) was generally associated with less depression after surgery. Moreover, poorer preoperative adjustment combined with older age, generalized seizures, the finding of preoperative neurologic deficits, a family history of psychiatric illness, and/or a family history of seizures was related to higher depression scores 2 years after surgery. CONCLUSIONS: Depression after temporal lobectomy is dependent on a complex interaction of variables and can have a significant effect on indices of postoperative adjustment. The WPSI emotional adjustment scale may help to predict which patients are likely to be chronically depressed after surgery.

Influence of seizure content on interpreting psychopathology on the MMPI-2 in patients with epilepsy.

We investigated whether seizure content items inflate MMPI-2 scores in persons with epilepsy. A mean MMPI-2 profile was generated for 100 epilepsy patients. Two expert raters then identified MMPI-2 items reflecting seizure symptoms. When individual profiles were rescored to remove elevations caused by seizure content, some statistically significant (but not clinically significant) decreases were observed. The MMPI-2 appears to be a valid assessment instrument in epilepsy. In most cases seizure content did not alter clinical interpretation. When the interest is in detecting symptom change, assessing both statistical and clinical significance is recommended in future MMPI-2 research.

Health-related quality of life and seizure control in temporal lobe epilepsy.

We conducted a prospective study over 24 months to compare health-related quality of life in surgically and medically treated patients with intractable temporal lobe epilepsy. Seizure frequency and health-related quality of life were assessed in 81 patients before and 6, 12, and 24 months after treatment. Using the Epilepsy Surgery Inventory 55 (ESI-55), we compared (1) different seizure outcome groups and (2) temporal lobectomy with continuing medical management. Follow-up was satisfactory in 72 patients (89%), 51 treated with temporal lobectomy and 21 with no surgery. Pretreatment seizures and health-related quality of life were comparable in the two groups. Seizure outcome was significantly better at 6, 12, and 24 months after surgery. At 24 months, seizure-free patients and those with at least a 90% reduction in seizure frequency reported significant improvements in health-related quality of life (on 5 of 10 subscales and overall Epilepsy Surgery Inventory 55 scale). Deterioration in quality of life occurred with less than 90% seizure reduction. Only one Epilepsy Surgery Inventory 55 subscale at 6 months and two subscales at 12 months showed a significant difference. Patients with good seizure outcome experience improved health-related quality of life after treatment. Since temporal lobectomy results in considerably better seizure control than continued medical management, the findings support surgery as the preferred treatment, although changes in health-related quality of life may not be evident until the second postoperative year.

Psychiatric disorders in candidates for surgery for epilepsy.

OBJECTIVE: To provide a descriptive analysis of the prevalence and pattern of psychiatric morbidity among 300 consecutive epileptic patients refractive to treatment and admitted during a six year period for evaluation of their candidature for surgery. METHODS: Patients underwent detailed observation of their seizure and standardised psychiatric assessment. Patients were considered to be refractory to treatment if they continued to manifest seizures with an average frequency of at least once every month even with polytherapy using up to three different anti-convulsants for a period of at least two years. Of the 300 patients, 231 had a temporal lobe focus, 43 had a non-temporal lobe focus, and 26 patients had a generalised and multifocal seizure onset. RESULTS AND CONCLUSIONS: With the DSM-III-R criteria 142 (47.3%) patients emerged as psychiatric cases. A principal axis I diagnosis was made in 88 (29.3%), and an axis II diagnosis (personality disorder) in another 54 (18.0%) patients. The most common axis I diagnosis was anxiety disorders (10.7%). A schizophrenia-like psychosis was seen in 13 (4.3%). Most patients with personality disorders showed dependent and avoidant personality traits. There was a significantly higher psychotic subscore on the present state examination in the temporal than with the non-temporal group of patients. These findings were not significant when compared with patients with a generalised and multifocal seizure disorder. There were no significant findings between the different seizure focus groups on the neurotic subscores. The findings with regard to laterality of seizure focus and the neurotic or psychotic subscores were not significant.

Determinants of health-related quality of life after temporal lobe epilepsy surgery.

Temporal lobectomy appears to be an effective treatment for medically intractable epilepsy. However, the influences of pre-operative health status and post-operative reductions in seizure activity on post-surgical health-related quality of life (HRQOL) are not well understood. We used the Epilepsy Surgery Inventory 55 (ESI-55) to evaluate changes between pre- and post-operative HRQOL in 47 temporal lobectomy patients. Patients exhibited significantly improved scores in five HRQOL domains: health perceptions; energy fatigue; social function; cognitive function and role limitations due to physical problems. Although significant improvements in HRQOL were observed, this was not the case for all patients. Specifically, patients with low or medium pre-operative HRQOL scores were found to have the greatest degree of improvement post-operatively. Patients with high pre-operative scores did not exhibit these same improvements, although they continued to report high scores. The results indicate that the ESI-55 is a satisfactory instrument to measure change in HRQOL but also emphasizes that the magnitude of change in post-operative HRQOL scores tends to vary according to baseline scores. The outcome of temporal lobectomy is not entirely based upon the procedure's ability to reduce the frequency of seizures, but is also influenced by level of HRQOL prior to surgery.

Neuroticism in temporal lobe epilepsy: assessment and implications for pre- and postoperative psychosocial adjustment and health-related quality of life.

We assessed 77 candidates for epilepsy surgery to determine the association among neuroticism (a dimension of personality characterized by chronic negative emotions and behaviors), psychosocial adjustment as measured by the Washington Psychosocial Seizure Inventory (WPSI), and health-related quality of life (HRQOL) as measured by the Epilepsy Surgery Inventory 55 (ESI-55). Minnesota Multiphasic Personality Inventory 2 (MMPI-2) Neuroticism scale scores were significantly correlated with many domains of patient -perceived psychosocial adjustment and HRQOL regardless of frequency or type of seizures. We then followed 45 of the patients who subsequently underwent epilepsy surgery to determine the influence of neuroticism on postoperative functioning. Two-way analysis of variance (ANOVA) indicated that patients with high preoperative neuroticism had significantly poorer postoperative psychosocial adjustment and HRQOL scores than patients who had low or moderate preoperative neuroticism scores. These results support the validity of the MMPI-2 as a useful measure of neuroticism. Preoperative neuroticism has an important influence on postoperative psychosocial adjustment and HRQOL that is independent of postoperative seizure outcome. Understanding the influence of personality variables, such as neuroticism, on psychosocial functioning both before and after epilepsy surgery is essential in managing intractable seizures.

The MMPI-2 as an adjunct to the diagnosis of pseudoseizures.

Although the original Minnesota multiphasic personality inventory (MMPI) showed promise in the psychometric discrimination of patients with epileptic seizures and pseudoseizures, inconsistencies and relatively low rates of accuracy have been reported. The present study evaluated the restandardized MMPI-2 for its accuracy in discriminating patients with pseudoseizures in a population with intractable epilepsy. MMPI-2 profiles for 139 consecutive adult inpatients (24 with pseudoseizures) were classified as a pseudoseizure pattern if they had (a) a T score on Scale 1 and/or 3 > or = 65, (b) Scale 1 or 3 in the 2-point high code, and (c) if 1 or 3 was not the highest scale, it was < or = 6T from the highest scale. Compared to studies using the original MMPI, it was expected the MMPI-2 would more accurately classify patients in each group. Preliminary analyses revealed pseudoseizure patients had a greater history of mental health interventions and were older when their seizure disorder began, relative to the epilepsy patients. A classification accuracy of 92% was found for pseudoseizures and 94% for epilepsy patients. For the pseudoseizure group, clinically meaningful MMPI-2 elevations followed a 3-1-2 pattern. No mean elevations above a T value of 65 were seen in the epilepsy group.

Patient expectations and postoperative depression, anxiety, and psychosocial adjustment after temporal lobectomy: a prospective study.

This study examined the effects of patient expectations on short-term postoperative psychological adjustment alter surgery for epilepsy. Twenty-seven subjects (17 operative, 10 nonoperative controls) agreed to participate. A prospective longitudinal design assessed whether changes in psychosocial functioning had occurred at a mean of 7 weeks after surgery relative to the presurgical assessment. The study also examined the relation between postoperative psychosocial adjustment and preoperative patient expectations. It was found that seizure-free outcomes were associated with significant declines in depression and anxiety. Patients who exhibited preoperative optimistic expectations had lower levels of postoperative depression and anxiety, as long as they were rendered seizure-free. Conversely, those who had optimistic preoperative expectations but were not rendered seizure-free postsurgically continued to exhibit moderate to high levels of depression and anxiety. The theoretical significance of optimistic expectations and their effects on individual self-efficacy are discussed to support the notion that postsurgical adjustment is related to personal coping, even in those patients who are seizure-free after surgery.

Psychosocial function following temporal lobectomy: influence of seizure control and learned helplessness.

Learned helplessness is the perception that one's behaviour cannot produce a desired outcome. Individuals with intractable epilepsy who have learned that the occurrence of a seizure is beyond their control can develop such a helpless attitude with cognitive, affective and behavioral components which may generalize to many aspects of life. Post-operative testing was done on 42 patients, aged 17-60 years with I.Q. > 80 who had temporal lobectomies (25 R, 17 L) with follow-up 1-14 years (mean 5 years). In addition to seizure outcome, psychosocial adjustment was measured using the Washington Psychosocial Inventory (WPSI) and a structured interview. Three variables of learned helplessness were also assessed: internal or external locus of control, resourcefulness, and depression. Seizure outcome was: completely seizure free, 36%; > 90% improvement, 38% < 90% improvement, 26%. Overall post-operative psychosocial adjustment was good, marked improvement in lifestyle was noted by 85%, personality change for the better by 65% and improved mood by 47%. A transient mood disorder was noted by 38% in the first six months following surgery. Psychosocial adjustment was better in patients who were seizure free or had > 90% reduction in seizures compared to those with < 90% improvement. Two measures of learned helplessness, depression and lack of resourcefulness correlated with poor postoperative psychosocial adjustment. Other variables beside seizure control must be considered in determining the ultimate outcome of epilepsy surgery.

Depressed and nondepressed content self-reference in mild depressives.

The present research investigated the extent to which mild depressives and normals differed in their self-referent processing of personal information. In Experiment 1, these subjects made two types of ratings on depressed (e.g., bleak, dismal) and nondepressed (e.g., loyal, organized) content personal adjectives. Half of the adjectives in each content category were rated for a semantic attribute (Does this word have a specific meaning or relate to a specific situation?), whereas half were rated for degree of self-reference (Does this word describe you?). These ratings were followed immediately by an incidental recall task, in which subjects recalled as many of the adjectives as possible. Consistent with predictions generated from a content-specific self-schema model, normals displayed superior recall for self-referenced nondepressed content adjectives, when compared to recall for self-referenced depressed content adjectives and recall for semantic ratings (both depressed and nondepressed content). In contrast, mild depressives exhibited enhanced self-referent recall for both types of content, when compared to their recall for semantic adjectives. This finding suggested that mild depressives utilize a self-schema which incorporates both depressed and nondepressed content. Experiment 2 explored this suggestion further by substituting an other-referent rating task (Does this word describe Pierre Trudeau?) for the semantic judgment used in Experiment 1. Again, consistent with a content-specific self-schema model, normals displayed superior recall only for self-referenced nondepressed adjectives. Mild depressives, however, showed enhanced self-referent recall, relative to other-referent recall, only for depressed content adjectives. For nondepressed content, mild depressives did not distinguish between the self- and other-referent conditions. This finding hinted that the nondepressed component of the mild depressive's self-schema may operate at a somewhat reduced effectiveness, but only when required to differentiate between self and others.