The coordinated psychosocial and neurologic care of children with seizures and their families

SUMMARY: As the medical and surgical management of epilepsy continues to advance, issues associated with the quality of life of patients and their families can be addressed. Whenever associated with other handicaps, such as learning disabilities, attentional or behavioral disorders, and problems in psychological adjustment, dual-diagnosis issues must be identified. To provide comprehensive care for children with epilepsy, a team approach to psychosocial assessment and treatment must be provided and coordinated with neurologic care. When the age-related needs in the life stage of the individual and family are identified, the best possible adaptation of the patient and his or her family can be supported.     

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.     

Presurgery Expectations, Postsurgery Satisfaction, and Psychosocial Adjustment After Epilepsy Surgery

Summary: Purpose: The medical benefits of epilepsy surgery are well documented, but the psychosocial consequences of surgery have received less attention. This is especially true of the roles of expectations and satisfaction in postsurgery functioning. The present study was designed to examine the relationships between expectation, satisfaction with surgery, and psychosocial functioning in patients and their significant others before and after epilepsy surgery. Methods: The neuropsychology findings of 79 patients undergoing epilepsy surgery were examined from assessments made before, 2 months after, and 1 year after anterior temporal lobectomy (ATL) was performed. The Minnesota Multiphasic Personality Inventory (MMPI) and the Washington Psychosocial Seizure Inventory (WPSI) were used to assess psychosocial functioning. A subset of 32 patients and their significant others were followed prospectively with an additional semistructured interview to assess expectations for and satisfaction with surgery outcome. Results: Before surgery, patients showed considerable problems with psychosocial adjustment. After surgery, patients in the seizure-free group showed improvements on the psychosocial measures at both follow-ups, whereas patients with continued seizures showed improvement at the 2-month follow -up and then a decline to baseline or worse at the time of the 1-year follow-up. Subjects who were studied prospectively had high presurgery expectations for seizure elimination. After surgery, subjects whose expectations were met reported high satisfaction whereas subjects whose expectations were not met reported low satisfaction. Satisfaction with surgery was associated with better psychosocial functioning. Conclusions: Such data help elucidate the ways in which successful epilepsy surgery results in improved psychosocial functioning. The results identify ways to increase the likelihood that both patients who are seizure-free and those with reduced seizure frequency may benefit from surgery.     

Psychosocial Sequelae of Epilepsy: The Role of Associated Cerebral Pathology

The psychosocial problems of a group of subjects with idiopathic epilepsy and another with posttraumatic epilepsy were assessed using the Washington Psychosocial Seizure Inventory (WPSI). A comparison between the two aetiological groups suggests that the associated cerebral pathology is the salient epilepsy-related factor in the emergence of psychosocial disability in a proportion of people with epilepsy. It is suggested that cerebral pathology may account for variations in previous psychosocial comparisons and future research should minimise possible confounding by attempting to control this factor.     

Adjustment and coping in epilepsy.

Our study investigated interrelationships between problems in psychosocial adjustment, coping and epilepsy variables. Establishing the cross-cultural applicability of the Washington Psychosocial Seizure Inventory (WPSI) was an additional objective. The WPSI, Ways of Coping Scale, Modified Version, as well as scales measuring depression and anxiety were administered to 310 outpatients with epilepsy. When the scores of patients with high Lie scores were eliminated, the WPSI profiles were found to be similar to former studies, with some score elevations in emotional adjustment and interpersonal adjustment. When relationships between adjustment variables and coping were modelled, coping was found to be a mediator between the effects of interpersonal and emotional adjustment and integration to the broader social context (vocational adjustment). Family background was found to be a significant predictor of the emotional well-being and interpersonal adjustment scores of the patients. Results support the central role of coping and emotional well-being and emphasize the importance of family factors in adjustment to epilepsy. Psychotherapy and psychological interventions could support coping with illness, primarily through elimination of negative family and social effects and treatment of emotional problems.     

Coping, affective distress, and psychosocial adjustment among people with traumatic upper limb amputations

OBJECTIVE: This study investigated the prevalence of symptoms of depression and anxiety in a sample of predominantly elderly males with acquired upper limb amputations (n=138) and examined the contribution of coping strategies to the prediction of psychosocial adjustment. METHOD: One hundred and thirty-eight men with injury-related upper limb amputations completed self-report questionnaires assessing coping strategies, symptoms of anxiety and depression, and psychosocial adaptation to prosthesis use. RESULTS: Prevalence of significant depressive symptoms was 28.3% [Hospital Anxiety and Depression Scale, Depression subscale (HADS-D) score > or =8]. Prevalence of significant anxiety symptoms was 35.5% [HADS Anxiety subscale (HADS-A) score > or =8]. Coping styles emerged as important predictors of psychosocial adaptation. In particular, avoidance was strongly associated with psychological distress and poor adjustment. CONCLUSIONS: These findings suggest the potential benefits of interventions to reduce reliance on avoidant coping and stimulate more problem-focused approaches to coping with difficulties and challenges in order to facilitate adaptation and prevent problems in psychosocial functioning postamputation.     

Psychosocial impact of epileptic seizures in a Dutch epilepsy population: a comparative Washington Psychosocial Seizure Inventory study

PURPOSE: The psychosocial functioning of epilepsy patients from the Netherlands was investigated and compared with results from other countries. The impact of epilepsy was also studied in two different groups of Dutch epilepsy patients, inpatients and outpatients. METHODS: The Washington Psychosocial Seizure Inventory (WPSI) was used to study the psychosocial problems of 134 Dutch outpatients and 181 Dutch inpatients. WPSI profiles were compared with those from the former German Democratic Republic (West Germany), Finland, Canada, the United States, Chile, and Japan. RESULTS: For the Dutch epilepsy patients, most of the psychosocial problems were experienced by inpatients; they had serious problems in emotional, interpersonal, and vocational adjustment, adjustment to seizures, and overall psychosocial functioning. Seizure-free outpatients, however, experienced significant problems only in the emotional adjustment area. Comparing the outcomes of various countries, Dutch outpatients and patients from West Germany and Finland experienced the least psychosocial difficulties, whereas epilepsy patients from Chile, Japan, and Canada have serious problems in most areas of psychosocial functioning. CONCLUSIONS: Patients with epilepsy experience psychosocial problems, although the amount of psychosocial difficulties depends on the seizure frequency and the culture that patients live in.     

Psychosocial Well-Being of Carers of People with Epilepsy in Hong Kong

The purpose of this study was to explore the factors associated with the quality of life and emotional states of the caregivers of people with epilepsy in Hong Kong. Sixty-five primary caregivers were administered rating scales of mood, quality of life, and intensity of various epileptic and psychosocial variables. Twenty-two percent of respondents were considered to have severe levels of anxiety, and 14%, severe levels of depression. Three-quarters of the caregivers interviewed had below-average scores on the quality-of-life measure, indicating that the carers' psychosocial adjustment was impaired. Contrary to the findings of previous studies, caregivers of patients with additional illnesses or learning disabilities were not more distressed than caregivers of patients with epilepsy only. Demographic characteristics and other medical and social factors associated with the psychosocial well-being of the carers of people with epilepsy were discussed. The findings of this study suggest the importance of including systematic measures of people's subjective experiences and perceptions in the study of social and psychological aspects of epilepsy.     

Psychosocial Dimensions of Epilepsy: A Review of the Literature

The literature on psychosocial dimensions of epilepsy has been reviewed utilizing the framework developed by Dodrill et al. (Epilepsia 1980; 21:123-35). Factors considered were family background, emotional adjustment, interpersonal adjustment, vocational adjustment, financial status, adjustment to seizures, and medicine and medical management. The published studies highlighted a number of issues and sometimes rendered varying and contradictory conclusions. In general, epilepsy fosters certain reactions in family members. If negative, these reactions may be detrimental to the person with epilepsy. The association between specific emotional adjustment factors and epilepsy is not conclusive. Studies have been published which support as well as refute this association. Studies indicate that persons with epilepsy experience lower rates of marriage and more sexual difficulties than do nonepileptic persons. Studies report greater unemployment and underemployment in epileptic persons than in the population at large. Studies suggest that some persons with epilepsy manifest an attitude of nonacceptance of self. Some are reluctant to disclose their disability to others. The studies also indicate the presence of a discriminatory attitude by some nonepileptic persons toward epileptic persons. Several factors are associated with successful medical management of epilepsy. The emphasis in research studies with regard to psychosocial aspects of epilepsy focuses predominantly on individual deficiencies rather than on strengths and abilities.     

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.     

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.     

Epilepsy and employment: literature review

OBJECTIVE: The aim of this review is to increase understanding of the factors that affect the regular employment positions of people with epilepsy by means of the World Health Organization International Classification of Functioning, Disability, and Health (ICF) model. METHOD: Thirty-four primary research articles describing factors associated with employment for people with epilepsy are reviewed. RESULTS: People with epilepsy may face a number of complex and interacting problems in finding and maintaining employment. Stigma, seizure severity, and psychosocial variables such as low self-esteem, passive coping style, and low self-efficacy have been implicated as factors that play an important role in predicting employment. Findings demonstrate the need for specific employment training programs. CONCLUSION: We recommend specific training interventions that focus on increasing the self-efficacy and coping skills of people with epilepsy so that these individuals will be able to accept their disorder and make personal and health-related choices that help them to achieve better employment positions in society.     

The Clinical Course of Epilepsy and Its Psychosocial Correlates: Findings from a U.K. Community Study

As part of a large community-based study, we retrospectively examined the clinical course of epilepsy in an unselected population of people who had a recent history of seizures or were receiving antiepileptic drugs (AEDs). Clinical information was collected from medical records, and information about psychosocial functioning was obtained by means of postal questionnaires sent to identified subjects. The response rate to the postal questionnaire was 71%. There were some deficiencies in the recording of clinical data, which is not unusual since data were taken from records held by primary physicians rather than from hospital clinics. Nevertheless, findings regarding the clinical course of epilepsy corresponded to those of earlier studies. Fifty-seven percent of the sample had had at least a 2-year seizure-free period and 46% of subjects were currently in a remission of at least 2-year duration. There was a clear relationship between current seizure frequency and levels of anxiety and depression, perceived impact of epilepsy, perceived stigma, and marital and employment status. The relationship of seizure frequency and other clinical variables to psychosocial function was explored by multivariate analysis techniques. The amount of variation in scores on the various measures of function accounted for by the clinical variables was small. The most important predictor was current seizure activity, which was the first variable to enter the regression analyses for six of the eight measures of psychosocial function considered. Age at epilepsy onset also emerged as a significant predictor for depression, stigma, and marital status. In individuals with epilepsy in remission, there was little evidence that psychosocial functioning was associated with length of remission, a finding which may in part reflect the nature of this study population. The results indicate that there are several more important predictors of psychopathology and social dysfunction in epilepsy and suggest several implications for treatment interventions.     

Assessment of Quality of Life in People with Epilepsy: Some Practical Implications

Summary: Growing recognition of the need to assess the impact of epilepsy on psychosocial functioning has led to a number of initiatives to quantify quality of life (QOL) in patients with this condition. To understand the impact of epilepsy and its treatment, physical, social, neuropsychological, and psychological functioning aspects must be considered. It also is apparent from previous research work that measures of QOL should be comprehensive enough to address the question under consideration, but also simple and as brief as possible. A number of QOL measures for assessing the impact of epilepsy and its treatment exist, such as the Washington Psychosocial Seizure Inventory, the Social Effects Scale, the Epilepsy Surgery Inventory, the Quality of Life in Epilepsy (QOLIE) questionnaire, and the Liverpool QOL Battery. These measures have in most cases been shown to be reliable, valid, and sensitive to change, although at the current stage of development, some are better validated than others. It is generally agreed that the best approach is to use a standard generic instrument with disease-specific additions. Selection of a measure already in existence is recommended, as the process of producing a new measure is costly in terms of both resources and time. Some consideration also needs to be given to factors such as the process of administration (e.g., self-completion or administration at interview) or the timing of data collection. Then questions such as the cross-cultural applicability of QOL measures and the real relevance of the changes remain to be answered. It is hoped that, over the next few years, significant progress will be made in addressing these issues.     

Personality traits and social behaviors predict the psychological adjustment of Chinese people with epilepsy

Very little is known about the psychosocial correlates of psychological morbidity among Chinese people with epilepsy (PWE). No studies have investigated the association between social relationships and psychological morbidity, while most studies examined only the negative impact of maladaptive personalities on psychological adjustment in PWE. This study examined the association of psychological morbidity with a broad array of personality traits and social skills in a sample of 54 Chinese PWE. Respondents completed the Temperament and Character Inventory (TCI), the Social Performance Survey Schedule (SPSS), and the Hospital Anxiety and Depression Scale (HADS) via semi-structured interview. Regression analyses revealed that, independent of demographic and medical variables and perceived impact, Harm Avoidance was positively associated with anxiety and depression whereas Self-Directedness was negatively associated with anxiety and depression; that Cooperativeness was inversely associated with anxiety. Social skills were inversely associated with depression whereas negative social skills were inversely associated with anxiety. Clinical implications of adaptive personality traits and social skills functioning are discussed.     

Parent caregiver adjustment to cancer of an adult child

OBJECTIVE: The objective of this study is to assess which contextual variables (parent caregiver, social support, age and gender) and objective variables (type of diagnosis, stage of illness and patient distress) affected the adjustment to illness of parent caregivers of an adult married ill child. METHOD: Forty-one parent caregivers of an adult married cancer-diagnosed child completed a questionnaire that measured psychological adjustment (Brief Symptom Inventory, BSI), psychosocial adjustment to illness (Psychosocial Adjustment to Illness Scale, PAIS) and social support (MSSPS). RESULTS: Preliminary findings indicate that social support and the patient's psychological distress were the main effects on the parents' psychological adjustment to the illness. CONCLUSION: A psychosocial intervention program for parents is needed so as to reduce their distress arising from the stress of the illness.     

Role of Child-Mother Interaction in Predicting Competence of Children with Epilepsy

Summary: Child-mother interaction in two problem- solving situations was observed in 59 children with epilepsy aged 7–13 years and was related to their psychosocial adjustment in school and in an independent problem- solving activity. Mothers' support for their child's task completion, the availability of affective expressions in the interaction, and the child's self-reliance in interacting with the mother were significantly correlated with the adjustment measures. Factor scores based on the ratings of child-mother interaction accounted for significant increments in the adjustment measures after child age, gender, IQ, epilepsy variables, and family life stress were partialled out. The results support the view that child- parent relationships are important predictors of adjustment for children with epilepsy.     

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.     

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.     

Depression and schizophrenia in epilepsy: social and biological risk factors

BACKGROUND: In a retrospective study we investigated the role of social and biological risk factors for the development of major depression and schizophreniform psychoses in epilepsy. We tested the hypotheses that social risk factors are associated with depression and biological risk factors are associated with schizophreniform psychoses. METHOD: We studied 25 patients with epilepsy and paranoid-hallucinatory psychosis, 25 patients with epilepsy and major depression, and 50 non-psychiatric epilepsy patients (controls) with respect to biological and psychosocial variables. RESULTS: Schizophrenic patients had an earlier age of onset of epilepsy and a more severe epilepsy as characterised by history of status epilepticus, multiple seizure types and severity of seizures compared to non-psychiatric controls. Simple seizure symptoms were often vegetative and EEGs showed various abnormalities including temporal lobe discharges but no lateralisation to either side. With respect to antiepileptic drugs (AED) there were only few significant differences between groups: Polytherapy as well as treatment with phenytoin (DPH) was more frequent in psychotic patients as compared to non-psychiatric patients. Patients with psychoses were also characterized by a disturbed familial background, lack of interpersonal relationships, social dependency and professional failure. Depressive patients were significantly older than non-psychiatric controls and they suffered more frequently from focal epilepsies arising from the temporal lobe. They did not differ from controls with respect to severity of epilepsy. Treatment with valproate (VPA) was inversely linked with depression, suggesting that VPA may have prophylactic antidepressive properties in epilepsy patients. There were no psychosocial variables significantly linked with depression. CONCLUSIONS: In this study, patients with different forms of psychiatric complications in epilepsy could clearly be distinguished from controls. However, we could not confirm the simple hypothesis that there are biological predictors for schizophreniform psychoses and psychosocial predictors for major depression. Neurological and sociological variables seem linked with both, suggesting a multifactorial etiology.