Profiles of psychosocial outcome after epilepsy surgery: The role of personality

Purpose: We have previously found that the developmental time frame of epilepsy onset influences adult personality traits and subsequent adjustment to intractable seizures. In the same cohort of patients we now investigate the influence of these factors on psychosocial outcome after surgical treatment. Methods: Fifty‐seven adult patients with focal epilepsy were prospectively assessed before and after surgery. Measures of psychosocial outcome included mood, health‐related quality of life (HRQOL), and psychosocial adjustment, collected longitudinally at 1‐, 3‐, and 12‐months after surgery. Results: Patients with high neuroticism and low extraversion were predisposed to greater depression after surgery. More than 70% of patients with high neuroticism also reported disrupted family dynamics and difficulties adjusting to seizure freedom. The latter was associated with changes in self‐identity that increased over time. Patients with epilepsy onset before or during the self‐defining period of adolescence reported the greatest perceived self‐change after surgery that had positive effects for HRQOL. Discussion: Psychosocial outcome after epilepsy surgery appears intrinsically linked to a change in self and a transition from chronically sick to well. The development of personality traits and self‐identity in the context of habitual seizures can impact psychosocial outcome and the extent of self‐change reported after surgery, and paradoxically, can concur more beneficial effects.     

Psychosocial adjustment of epilepsy patients in Cyprus

This study investigated aspects of psychosocial adjustment in epilepsy patients in Cyprus. Sixty-three patients under 55years of age with idiopathic or symptomatic epilepsy and 89 neurologically matched healthy volunteers participated. Subjects completed the State and Trait Anxiety Inventory and the Beck Depression Inventory; patients with epilepsy also completed the Epilepsy Foundation Concerns Index. Results showed that patients with symptomatic epilepsy had significantly higher scores on state and trait anxiety and depressive symptoms. Sociodemographic characteristics including gender, marital status, and education levels contributed to differences in trait and state anxiety, depressive symptom scales, autonomy concerns, and fear for seizure recurrence. Variables such as poor seizure control and use of polytherapy were associated with lower adjustment scores and reduced psychosocial outcome. Finally, patients with epilepsy scored significantly higher on depression and anxiety symptoms. The results provide further evidence on challenges patients with epilepsy face and on the need for implementing psychosocial prevention programs.     

Surgical versus medical treatment for refractory epilepsy: Outcomes beyond seizure control

Nearly one third of patients with epilepsy become medically intractable, and the likelihood of achieving seizure freedom decreases with each additional medication trial. For appropriately chosen patients, epilepsy surgery affords the opportunity to achieve seizure freedom and potentially wean off medications. Epilepsy surgery, as with medical management, is not without adverse effects; to counsel patients wisely, practitioners need to understand the advantages and disadvantages of both. Randomized controlled trials in temporal lobe epilepsy reveal that epilepsy surgery achieves superior outcome compared to continued medical management. Although seizure freedom is the ultimate goal of any therapy, it represents a single outcome measure among a variety of other domains that affect patient welfare. It is imperative that providers understand the patient variables that affect these outcome measures and how these measures impact each other. Because the data comparing surgical therapy versus medical management for refractory epilepsy are limited, we review the available evidence comparing outcomes beyond seizure freedom including quality of life, cognition, psychosocial function, mortality, and financial costs.     

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.     

Causal attributions for seizures: Relation to preoperative psychological adjustment and postoperative psychosocial function in temporal lobe epilepsy

In a sample of 65 epilepsy patients who were temporal lobectomy candidates, the links between causal attributions, learned resourcefulness, and preoperative psychosocial adjustment were explored. In addition, attributions as predictors of objective 2-year postoperative psychosocial outcomes were examined prospectively. With illness severity controlled for, attribution of seizures to stress factors and low learned resourcefulness were predictive of poor psychosocial adjustment preoperatively. Taking personal responsibility for seizure occurrence (self-blame) was associated with better psychosocial adjustment. At 2 years, patients were divided into three groups: (a) postoperative seizure-free (n = 21), (b) postoperative not seizure-free (n = 19), and (c) nonoperated controls (n = 25). Seizure-free outcome status was associated with better psychosocial outcome. Of greater interest was the predictive value of preoperative attributions. As expected, attributions involving personal responsibility were predictive of postoperative full-time employment and receipt of disability benefits. The data enhance understanding of the ways in which patients with epilepsy manage the challenges they face and enhance the psychometric prediction of psychosocial behavioral outcomes after epilepsy surgery.     

Social functioning, psychological functioning, and quality of life in epilepsy

PURPOSE: Part of our research intended to explain "Quality of Life" (QoL) differences between people with epilepsy. To this end, a series of already existing generic and disease-specific health status measures were used. In this study, they were considered as determinants of people's QoL, whereas QoL itself was conceived as a general "value judgment" about one's life. METHODS: From the records of four outpatient clinics, 210 persons with epilepsy were randomly selected. During their visit to the outpatient clinic, they completed a questionnaire assessing, among other things, health perceptions and social and psychological functioning. Additional information about their medical and psychosocial status was gathered from the patient files. Data were analysed by using a hierarchical regression analysis. RESULTS: In decreasing order of importance, "psychological distress," "loneliness," "adjustment and coping," and "stigma perception" appeared to contribute most significantly to the outcome QoL as judged by the patients themselves, regardless of their physical status. In the final model, none of the clinical variables (onset, seizure frequency, side effects of antiepileptic drugs) contributed significantly anymore to the patients' "quality-of-life judgement." Apparently the effect of other variables such as seizure frequency and health perceptions, medication and side effects, life fulfillment, self-esteem, and mastery is mediated by these variables. CONCLUSIONS: Because all of the variance in QoL of the patients was explained by the psychosocial variables included in this study, health professionals should be aware of the significance of the psychosocial functioning of the patients and the role it plays in the achievement of a good QoL. Both informal and professional support may be an adjunct to conventional treatment. In future research, this issue should be given high priority.     

Resective surgery for intractable focal epilepsy in patients with low IQ: predictors for seizure control and outcome with respect to seizures and neuropsychological and psychosocial functioning

PURPOSE: To investigate possible predictive factors for seizure control in a group of children and adults with low IQs (IQ, < or =70) who underwent resective surgery for intractable focal epilepsy and to study outcome with respect to seizures and neuropsychological functioning. We also studied psychosocial outcome in the adult patients. METHODS: Thirty-one patients (eight children younger than 18 years) with a Wechsler Full Scale IQ of 70 or less underwent comprehensive neuropsychological assessments before and 2 years after surgery. Adults also completed the Washington Psychosocial Seizure Inventory (WPSI). Univariate analyses were used to identify variables differentiating between patients who became seizure free and those who did not. Pre- and postoperative test results were compared by t test for dependent samples. RESULTS: Forty-eight percent of the patients became seizure free, 52% of those with temporal lobe resection and 38% of those with extratemporal resection. Only one variable was predictive for seizure outcome: duration of epilepsy. In one third of the patients, who had the shortest duration of epilepsy (<12 years), 80% became seizure free. Significant improvement was seen regarding vocational adjustment in adults (WPSI). Seizure-free adults improved their Full Scale IQ scores. No cognitive changes were found in seizure-free children or in patients who did not become seizure free. CONCLUSIONS: A good seizure outcome was obtained after resective surgery in patients with intractable focal epilepsy and low IQ, provided that treatment was done relatively shortly after onset of epilepsy. No adverse effects were seen on cognitive and psychosocial functioning.     

The impact of affectivity dispositions, self-efficacy and locus of control on psychosocial adjustment in patients with epilepsy

The main hypothesis of this study was that negative and positive affectivity, self-efficacy and health-related locus of control are important for psychosocial adjustment in patients with epilepsy. These dimensions are rarely examined directly in relation to the psychosocial adjustment in these patients. Correlations between measures of these constructs and measures of psychosocial adjustment in epilepsy were investigated. One hundred and one patients answered the Washington psychosocial seizure inventory (WPSI), the positive and negative affect schedule (PANAS-X), the multidimensional health locus of control scales (MHLC), the generalized self-efficacy scale and a scale measuring self-efficacy in epilepsy. Reliability analyses, correlational analyses and multiple stepwise regression analyses were performed. Negative affectivity (NA), positive affectivity (PA) and generalized self-efficacy showed high correlations with the WPSI scales emotional adjustment, overall psychosocial adjustment and quality of life. The epilepsy self-efficacy measures showed high, but lower correlations with the same WPSI scales. The MHLC scales showed low correlations with the WPSI scales. Multiple regression analyses showed that PA, NA and measures of self-efficacy explained more than 50% of the variances on emotional adjustment, overall psychosocial functioning and quality of life. In conclusion, positive and negative affectivity and self-efficacy are important predictors of perceived emotional adjustment, psychosocial adjustment and quality of life in patients with epilepsy. NA is the best predictor, but PA and self-efficacy measures give unique predictions independent of NA.     

Paradoxical results in the cure of chronic illness: the "burden of normality" as exemplified following seizure surgery

Little has been written about processes of recovery following life-changing medical interventions for chronic illness. This article reviews our research with chronic epilepsy patients undergoing neurosurgery for the relief of intractable partial seizures. This research has given rise to a new conceptualization of adjustment and outcome following effective treatment of chronic illness, representing the first, detailed characterization of this process from a psychological and psychosocial perspective. Crucial to outcome are patient and family expectations prior to treatment, and learning to discard roles associated with chronic illness after treatment. These and the posttreatment affective functioning of the patient temper the view of medical outcome, and can account for paradoxical clinical effects, such as worsening patient psychosocial functioning in the context of medical treatment success. Our results have clear implications for the clinical management of chronically ill patients and their families to optimize treatment outcome.     

Stable psychological functioning after surgery for epilepsy: An informant-based perspective

ObjectivePsychological adjustment following surgery for epilepsy has been assessed primarily with self-report measures. In the current work, we investigated pre- to postoperative changes in various dimensions of personality and behavior from the perspective of a well-known family member or friend for 27 patients operated on for medically intractable epilepsy.MethodsFor each patient, a close family member or friend (“informant”) provided pre- and postoperative ratings on five dimensions of personality and behavior. All ratings were collected during the chronic epoch of recovery, when personality and behavior of the patients are relatively stable. Self-report measures were also used to examine the relation between self-report and informant-report assessment of psychological adjustment. Lastly, the relation between seizure outcomes and psychological adjustment was investigated.ResultsPersonality and behavior characteristics, as rated by an informant, remained stable and within a normal range of functioning following surgery for epilepsy. There were no significant differences between pre- and postoperative levels of executive functioning, social behavior, hypo-emotionality, irascibility, or distress. Informant-ratings on levels of current depression and overall current psychological functioning were significantly related to patient reports of current depression and global personality characteristics derived from the MMPI-2 (e.g., psychasthenia, schizophrenia, hypomania, psychopathic deviation, social introversion). There was no significant relationship between seizure outcome and psychological adjustment.SignificanceInformant-based reports on psychological adjustment following surgery for epilepsy provide a unique perspective on important aspects of the success of the intervention. Assessing outcomes beyond seizure status is important for developing a comprehensive understanding of the potential consequences of surgery for epilepsy. Based on the current work, personality and behavior seem to be stable following surgery for epilepsy, and our study provides a unique informant-based perspective on this encouraging result.     

Neuroticism in Temporal Lobe Epilepsy: Assessment and Implications for Pre- and Postoperative Psychosocial Adjustment and Health-Related Quality of Life

Summary: 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.     

Psychosocial adjustment following relief of chronic narcolepsy

BACKGROUND AND PURPOSE: No previous research has examined the psychosocial adjustment of chronic narcolepsy patients following efficacious pharmacotherapy. In contrast, considerable research has examined the process of psychosocial adjustment following surgical relief of chronic epilepsy. This process can manifest as a clinical syndrome, the 'burden of normality', comprising psychological, behavioural, affective and sociological features. The aim of the present study was to characterise the process of psychosocial adjustment of patients with successfully treated narcolepsy and to explore the applicability of the burden of normality. PATIENTS AND METHODS: Thirty-three narcolepsy patients and 31 epilepsy surgery patients were recruited through routine outpatient follow-up at the Austin Hospital in Melbourne. All patients underwent in-depth, qualitative psychosocial assessment using a well-validated semi-structured interview, the Austin CEP Interview. They were also administered quantitative measures of anxiety (State Trait Anxiety Inventory) and depression (Beck Depression Inventory-II). RESULTS: Narcolepsy patients spontaneously reported similar themes of post-treatment adjustment to successfully treated epilepsy patients, including symptoms of the burden of normality. Chi-squared analyses revealed that the two groups differed only on disease-specific factors, reflecting the later diagnosis and treatment of narcolepsy (P<0.05). CONCLUSION: The results support a general model of adjustment following successful treatment of chronic neurological illness, as the patient discards perceptions of illness and behaviours associated with being 'sick' and learns to become 'well'. Recognition of the burden of normality has important clinical implications for maximising the post-treatment care and outcome of narcolepsy patients.     

Mood disturbance before and after seizure surgery: a comparison of temporal and extratemporal resections

PURPOSE: Mood disturbance is a common comorbid condition of temporal lobe epilepsy before and after seizure surgery. Few studies have examined mood disturbance in patients undergoing resections outside the temporal lobe (extratemporal resections). This study aimed to compare the early, postoperative evolution of mood disturbance in temporal and extratemporal lobe epilepsy patients to examine the effect of site of surgical resection on mood outcome. METHODS: The study used a longitudinal design and was qualitative in nature. Sixty seizure surgery patients (43 temporal resections, 17 extratemporal resections) were assessed before surgery and at discharge, 1 month, and 3 months after surgery, by using the Austin CEP Interview. Psychosocial adjustment, psychiatric difficulties, including depression and anxiety, and seizure frequency were assessed. RESULTS: Before surgery, both temporal and extratemporal patients had significant psychiatric histories with similarly high rates of depression (33 and 53%, respectively) and anxiety (23 and 18%, respectively). After surgery, significantly more temporal patients were seizure free at each of the reviews compared with extratemporal patients. Temporal patients also reported significantly higher levels of depression (26%), anxiety (42%), and psychosocial adjustment difficulties (64%) at the 1-month review than did extratemporal patients. Mood disturbance was significantly associated with adjustment difficulties in both groups, but was not related to seizure outcome at any review period. CONCLUSIONS: A general increase in mood disturbance was evident after surgery, particularly in temporal resection patients at the 1-month review. Site of surgery and psychosocial adjustment showed significant associations with postoperative mood disturbance, supporting the role of both neurobiological and psychosocial factors in mood outcome.     

Impact of epilepsy in adolescence: a UK controlled study

PURPOSE: The goals of the work described here were to investigate the psychological and social impact of epilepsy on adolescents and to identify to what degree clinical and demographic variables and knowledge of epilepsy could influence psychosocial functioning. METHODS: Seventy adolescents with epilepsy were compared with healthy controls (matched for age, sex, and reading ability) on measures of self-esteem, social adjustment, depression, and obsession. Within the epilepsy group, the impact of seizure frequency, seizure severity, and knowledge of epilepsy on the above measures was also determined. RESULTS: Adolescents with epilepsy showed significantly higher levels of depression, anhedonia, and social anxiety and significantly higher numbers of obsessive symptoms than the adolescents without epilepsy. Among the adolescents with epilepsy, high seizure frequency was significantly associated with low self-esteem, and tonic-clonic seizures were specifically associated with higher levels of depression. Finally, low levels of epilepsy knowledge were significantly associated with higher levels of depression, lower levels of self-esteem, and higher levels of social anxiety. CONCLUSIONS: Epilepsy has a significant psychosocial impact on adolescents at this difficult time of life. Social support and access to appropriate information about epilepsy could be of help.     

Characterizing psychosocial outcome trajectories following seizure surgery

PURPOSE: We have developed a new approach to characterizing psychosocial outcome after seizure surgery that allows us to identify diverse individual trajectories as well as subgroups of patients with similar outcomes. METHODS: Eighty-nine anterior temporal lobectomy (ATL) patients were recruited through our Seizure Surgery Follow-up and Rehabilitation Program. The Austin CEP Interview was used to measure psychosocial adjustment presurgery, at discharge, and 1, 3, 6, 12, and 24 months postsurgery. Patient outcome trajectories were characterized across this time frame using a profile-focused form of dual clustering that leads to a lattice representation. RESULTS: Two major, distinct outcome subgroups were identified. Fifty-eight percent (58%) of patients reported good outcomes, characterized by improved family dynamics, enhanced vocational and social functioning, and driving by 24 months postsurgery. A range of trajectories led to these outcomes, including the experience of early postoperative adjustment difficulties. In contrast, 31% of patients perceived their outcomes as poor, reporting affective disturbance at 12 months and difficulties discarding sick role behaviors. Early anxiety served as a marker of poor outcomes, while resolution of early anxiety and vocational change at 12 months were indicators of good outcomes at 24 months. The remaining 11% of patients reported minimal adjustment features. CONCLUSIONS: For the majority of patients, seizure surgery gives rise to an evolving process of postoperative adjustment that leads to distinct outcome trajectories. Our approach questions the clinical sensitivity of health-related quality of life measures that average across patients to provide a unitary measure of outcome. Although preliminary, the findings have implications for postoperative treatment, including the identification of markers of longer-term outcomes.     

Psychiatric comorbidity in patients with pharmacoresistant focal epilepsy and psychiatric outcome after epilepsy surgery

There are only a few studies in which both preoperative psychiatric comorbidity in pharmacoresistant focal epilepsy and its outcome after epilepsy surgery have been investigated. In this study, 144 patients evaluated for epilepsy surgery received psychiatric examination, 84 proceeding to intervention were reassessed postoperatively. Preoperatively, 60% met criteria for ICD-10- or epilepsy-specific psychiatric diagnosis. Twenty-seven percent, predominantly female, suffered from dysphoric disorder (DD) associated with temporal epileptogenic foci. Prevalence of DD correlated with complex partial seizure frequency and presence of ictal fear suggesting limbic-cortical dysregulation. Psychotic syndromes were linked to a history of febrile convulsions and left-sided temporomesial epileptogenic foci. High seizure frequency and early epilepsy onset predisposed to the development of personality disorders. Postoperative assessment revealed 18% of patients with "de novo" interictal affective disorders after surgery. Symptoms in 48% of patients with preoperative affective syndromes and 60% of patients with DD remitted after surgery. Seizure freedom and improved psychosocial status predicted remission of preoperative psychopathology.     

Predicting the quality of life in Hong Kong Chinese adults with epilepsy

Epilepsy is both a medical diagnosis and a social label. The traditional care of patients with epilepsy tends to focus on seizure control and drug treatment. There is a growing concern in the West about the importance of the influence of psychosocial factors on the quality of life. The main purpose of the present study is to explore and delineate the relationships between biomedical and psychosocial predictors and the health-related quality-of-life outcomes of Chinese patients in Hong Kong. Independent measures consisted of two types of predictors: biomedical and psychosocial variables. The biomedical variables included seizure frequency and the number of years since diagnosis. The psychosocial variables included locus of control, social support, and mood. The Quality of Life in Epilepsy Scale was used as the outcome measure. Correlation and hierarchical regression techniques were used. Results showed that psychosocial variables did make a significantly independent contribution to the prediction of the quality of life of patients with epilepsy. Furthermore, results suggested that mood could act as a mediator between seizure characteristics and psychosocial factors, on the one hand, and quality of life, on the other. The statistical significance of the health locus of control and the satisfaction with social support confirmed the importance of the influence of the subjective sense of mastery of condition on quality of life. The clinical implication was discussed in the context of developing psychological interventions in increasing the self-efficacy and resourcefulness of the patients.     

The burden of normality: A framework for rehabilitation after epilepsy surgery

Summary   This paper describes a conceptual framework that generates a modus operandi for rehabilitation after epilepsy surgery derived from regular longitudinal and prospective follow-up of patients and families. The framework focuses on patient experiences of undergoing surgery placed within the context of the family and broader community. It adopts a holistic view of patient care to understand the complex interactions between neurobiological and psychosocial factors that determine surgical outcome in the eyes of the patient, family, and clinical team. It emphasises the importance of anticipating postoperative adjustment issues using a preventive treatment approach.     

Psychosocial adjustment of people with epilepsy in Hong Kong

PURPOSE: In light of the issues associated with the psychosocial adjustment of people with epilepsy that have been widely reported, this study examined these issues within a Chinese cultural context. METHODS: Fifty patients with epilepsy completed The Washington Psychosocial Inventory, the Coping Inventory for Stressful Situations, and a questionnaire that assessed their psychosocial difficulties and coping styles. Multiple regression procedure was used to examine the strength of various medical and social factors in predicting the psychosocial adjustment problems of these participants. RESULTS: Social factors, such as self-perception and coping strategies, were more powerful predictors of psychosocial adjustment in people with epilepsy than the medical factors associated with epilepsy. CONCLUSIONS: These findings showed that psychosocial maladjustment is a significant issue for people with epilepsy in Hong Kong. The emerging importance of social factors as predictors of psychosocial adjustment in epilepsy, as compared with medical factors, highlights the need for developing tailored counseling therapy and social support groups for people with epilepsy.     

The "burden of normality": concepts of adjustment after surgery for seizures

OBJECTIVES: To conceptualise the process of adjustment provoked by the sudden alleviation of chronic epilepsy by temporal lobectomy. On being rendered seizure free, the process of adjustment primarily depends on the patient's capacity to discard roles associated with chronic epilepsy and to learn to become well. This can involve a reconceptualisation of the patient's identity from chronically ill to "cured", and can give rise to a constellation of psychological, affective, behavioural, and sociological features characterised as the "burden of normality". METHODS: This is a theoretical inquiry that documents the clinical phenomenology of the burden of normality by classifying its key psychological and psychosocial features. The model of adjustment is presented in the context of previous outcome research on surgery for seizures, providing a conceptual link between practice based rehabilitation measures of outcome and multidimensional constructs, such as health related quality of life. RESULTS: The model represents a process oriented, theoretical framework for comprehensively measuring outcome after life changing medical interventions. It has implications for clinical practice, including the identification of preoperative predictors of outcome and informing appropriate management and rehabilitation of patients. CONCLUSION: This model of outcome after temporal lobectomy may ultimately be applicable to the treatment of other chronic conditions.