More than seizures: improving the lives of people with refractory epilepsy

As captured by the proposed new definition, epilepsy is increasingly recognized as a disorder characterized not only by an enduring predisposition to recurrent seizures but explicitly also by the neurobiological, cognitive, psychological and social consequences of this condition. Further, both in the estimated 15 million people worldwide who have ongoing seizures despite optimal management and in a substantial proportion of those in remission, the consequences and comorbidities of epilepsy are the major determinants of quality of life. These include mood disorders such as anxiety and depression, dose related and longer term effects of antiepileptic drugs, including on prenatal development and bone health, and neurobehavioural effects. Whilst separating those that are part of an underlying condition or have unrelated contributors from those that are potentially remediable can be difficult, given the range of tools now available to assist with screening and management there is no excuse for not at least trying as part of standard care for people with epilepsy. Managing epilepsy well is about much more than controlling seizures and this needs to be recognized in planning and delivering services, as well as in prioritizing research.     

A psychosocial view of anxiety and depression in epilepsy

The aim of this study was to study anxiety and depression in patients with epilepsy and evaluate their relationships with neuroepilepsy and psychological variables. neuroepilepsy and psychological variables. Sixty patients and 60 healthy subjects were interviewed at the outpatient clinic for epilepsy, using the Beck Depression Inventory and State-Trait-Anxiety Inventory. The objective of the semistructured interview was to identify the patients' perception of the disease, self-concept, personal strategies, and perception of seizure control. There was a significant difference in anxiety and depression between the groups, as well as a strong relationship between perception of seizure control and depression and anxiety, independently assessed. Epilepsy was associated with disease (63.4%), mental problems (11.6%), feelings of shame, fear, worry, and low self-esteem (56.6%), and perception of stigma (26.6%). The strategies were: looking for social support, seeking medical treatment, withdrawal, denial, and spiritual support. There was a significant association between psychological symptoms and perception of seizure control, which reinforces the importance of subjective aspects involved in epilepsy.     

Meta-analysis of psychosocial interventions for people with dementia and anxiety or depression

Abstract

Objectives: Assess the effectiveness of psychosocial interventions for depression and anxiety in people with dementia (PWD) or mild cognitive impairment (MCI).

Method: OvidMedline, PsychInfo and Embase were searched for studies on the 5^th August 2017. The efficacy of the studies was estimated using meta-analyses.

Results: Eight RCTs were included. No RCTs were identified for people with MCI. Four RCTs found that psychosocial interventions (multicomponent intervention, Tai Chi, problem adaptation therapy and exercise/walking) were effective at reducing symptoms of depression in PWD who were depressed. One study (Tai Chi) found that these reductions were no longer evident at six-month follow-up. Another study, not included in the meta-analyses, found that pleasant events behaviour therapy and problem solving behaviour therapy improved depression symptoms and this effect remained significant at follow-up. Three RCTs found that psychosocial interventions (music therapy and cognitive behavioural therapy (CBT)) reduced symptoms of anxiety in PWD who were anxious. Evidence from two of these RCTs (music therapy and CBT) showed that these improvements were evident at three to six-month follow-up.

Conclusion: The identified psychosocial interventions are effective at reducing symptoms of depression or anxiety in PWD experiencing these symptoms. This review is limited by the quality of studies, small sample sizes and the heterogeneity of the interventions, therefore high quality studies with larger sample sizes are required to test the efficacy of specific interventions such as CBT.     

Evaluating the impact of deinstitutionalization on the lives of mentally retarded people

The evaluation of the impact of deinstitutionalization should be based upon a thorough analysis of the sociocultural values inherent in the movement and should reflect the nature of the relationship between evaluation research and social policy formation. This review of current evaluation practice indicates a general failure to provide information relevant to the agendas of policy makers and service consumers due to the investigation of a restricted range of outcomes, inattention to the ecological context of behavior, and a range of methodological weaknesses. Promising directions in measuring quality of life and pertinent environmental variables were discussed.     

A systematic review of psychosocial interventions for children and young people with epilepsy

BackgroundDespite recognition that psychosocial interventions can improve quality of life and mental health, there continues to be a lack of clarity and guidance around effective psychosocial interventions for children and young people with epilepsy. This review utilizes specific quality criteria to systematically identify and appraise the evidence for the effectiveness of psychosocial interventions for children and young people with epilepsy.MethodsA systematic search of six electronic databases was conducted using predefined eligibility criteria. The reference lists of previous review papers were also manually searched. Seventeen studies met the inclusion and exclusion criteria. A quality appraisal checklist, the ‘Crowe Critical Appraisal Tool’ (CCAT) (Crowe, 2013) [1] was applied to the included articles, and effect sizes were calculated when not provided in the papers.ResultsMethodological quality of the majority of studies included was moderate, with only three studies rated as high quality. Meta-analysis was not conducted as the studies used heterogeneous methodologies and lacked consistency in outcome measures. Limited evidence was found for interventions improving epilepsy knowledge, quality of life, and psychological outcomes.ConclusionsPsychosocial interventions may provide clinical benefit although further research is needed to clarify the most effective treatment components, delivery methods, and measurement of intervention outcomes. The existing evidence base for children and young people is limited by methodological issues such as the use of small samples, inadequate power, and a lack of controlled studies.     

The psychosocial impact of exercising with epilepsy: A narrative analysis

Research has presented the benefits of and barriers to exercise for people with epilepsy through quantitative means. However, individual experiences through qualitative investigations have been absent. This research will present the narratives of people with epilepsy exercising over time and, as a result, develop further understanding of the psychosocial impact of exercising with epilepsy. Four interviews were conducted over the course of one year (one every three to four months) with four participants (aged 23–38 years) who varied in seizure type and control (16 interviews in total). A narrative analysis was used to analyze their exercise experiences. Results showed that exercise creates a positive effect on psychological and physical well-being. However, prevention from exercise as a result of medical advice or recurrent seizures can create negative effects such as social isolation, anxiety, lack of confidence, frustration, and anger. Adaptations of decreasing exercise intensity level and partaking in different physical activities are techniques used to lessen the negative impact and maintain an exercise routine. Time was shown to be an important factor in this adaptation as well as portrayed the cyclical responses of negative and positive emotions in regard to their exercise life. These findings provide valuable insight into the psychosocial benefits of and barriers to exercising with epilepsy and draw attention to the individual differences in how a person with epilepsy copes with uncontrolled seizures and their impact on his/her exercise routine. This knowledge can lead to future research in exploring how a person with epilepsy can overcome these barriers to exercise and encourage more people with epilepsy to enjoy the benefits of exercise.     

Impact of depression and anxiety on adverse event profiles in Korean people with epilepsy

Previous studies have shown that depression and anxiety worsen the adverse events associated with antiepileptic drugs (AEDs) in people with epilepsy. These studies used the Liverpool Adverse Events Profile (LAEP) to screen adverse events. The LAEP incorporates items associated with emotion, which may themselves influence the reporting of adverse events. We investigated whether depression and anxiety still displayed an effect on adverse events when items related to emotion were excluded from the analysis. A total of 453 consecutive patients with epilepsy who took AEDs for at least 1 year completed self-report questionnaires, including the Korean versions of the LAEP (K-LAEP), the Beck Depression Inventory (K-BDI), and the Beck Anxiety Inventory (K-BAI). Firstly, we performed a discrimination analysis to identify the items affected by depression and/or anxiety among the 19 items included in the K-LAEP. Among these items, dizziness, nervousness and/or agitation, restlessness, and upset stomach had relatively higher levels of significance. Secondly, we performed a factor analysis to determine the subclass taxonomy of all items in the K-LAEP. The analysis segregated the items into three subclasses: cephalgia/coordination/sleep, emotion/cognition, and tegument/mucosa/weight. Lastly, we performed stepwise multiple regressions to demonstrate the predictors determining the K-LAEP and subclass scores. According to the regressions, the K-BAI and K-BDI scores and the duration of treatment of the antiepileptic medication were significant predictors. Specifically, the K-BAI score was a predictor of the scores of all three subclasses as well as the total K-LAEP score; the K-BDI score was a predictor of the total K-LAEP score and the emotion/cognition score; and the duration of treatment of the antiepileptic medication was a predictor of the tegument/mucosa/weight score. The K-BAI score was the strongest predictor of all the scores. Although this study showed a similar impact of depression and anxiety on the adverse event profiles as previous reports, it provided further insight into the contribution of the LAEP items associated with emotion. Other than the psychosocial predictors, the treatment duration of the antiepileptic medication was also found to be an important predictor in this study.     

The social context of anxiety and depression: Exploring the role of anxiety and depression in the lives of Australian adults with epilepsy

AimTo examine key determinants of anxiety and depression in a community sample of people with epilepsy.MethodData were analyzed from the 2010 Australian Epilepsy Longitudinal Survey, examining living with epilepsy in Australia. The HADS was analyzed, and Pearson correlations and block recursive regression were undertaken to identify key associations between anxiety, depression, and a range of variables and to identify key determinants of anxiety and depression.ResultsKey factors to influence anxiety were social aspects of stigma, effectiveness of seizure control, whether in employment, and the number of different epilepsy drugs. Determinants for depression were social aspects of stigma, whether in employment, and the effectiveness of seizure control. Stigma was also found to be an important mediating variable for employment, control, and the number of drugs.ConclusionUnderstanding the mechanisms involved in anxiety and depression in a community sample of people with epilepsy requires the inclusion of opportunities for paid employment and the effects of psychosocial factors such as stigma. Without this fuller social context, there are limitations on understanding factors that influence anxiety and depression and how to deal with the outcomes.     

A community study of the presence of anxiety disorder in people with epilepsy

Anxiety represents a major problem for people with epilepsy, and it is important to understand why it arises and how to reduce its potential debilitating and adverse effects. The aim of this study was to determine the prevalence of anxiety in a community-identified sample of people with epilepsy and to identify which demographic and clinical factors are most closely associated with anxiety and which factors predict the presence of anxiety among people with epilepsy. Adults with epilepsy in the community (n=515) were identified through primary care records and sent validated questionnaires, which included the Hospital Anxiety and Depression Scale (HADS). The mailout also included items on demographic and clinical variables. The prevalence of anxiety (HADS score >11) in this sample was 20.5% (95% CI: 16.9-24.1%) and was associated with a current history of depression, perceived side effects of antiepileptic medication, lower educational attainment, chronic ill health, female gender, and unemployment. It was not associated with the duration of epilepsy. The findings from this study suggest that anxiety disorders in a community population with epilepsy are most strongly predicted by factors independent of epilepsy-related variables, with the exception of patient-reported side effects. It is important to be aware of these factors when evaluating an individual with epilepsy.     

Frequency of affective symptoms and their psychosocial impact in Korean people with epilepsy: A survey at two tertiary care hospitals

We investigated the frequency of affective symptoms in Korean adults with epilepsy who visited epilepsy clinics at two tertiary care hospitals and in healthy adults. We also examined the psychosocial impact of affective symptoms on people with epilepsy (PWE). Participants were asked to complete self-report questionnaires to assess depression and anxiety symptoms, felt stigma, suicidal ideation, and quality of life (QOL). Of 568 PWE, 30.5% exhibited affective symptoms. The frequencies of depression and anxiety symptoms were 27.8% and 15.3%, respectively, significantly higher than those in healthy controls. Those with poor seizure control were more likely to endorse affective symptoms at the time of study. The frequencies of felt stigma and suicidal ideation were higher in PWE with affective symptoms than in those without. Quality of life was impacted by affective symptoms, especially when depression and anxiety coexisted. Reducing affective symptoms by appropriate seizure control may ameliorate psychosocial problems in PWE.     

The psychosocial impact of epilepsy on marriage: A narrative review

There have been many studies exploring quality of life as well as the impact of epilepsy on the affected individual. However, epilepsy affects more than the patients themselves, and there seems to be a paucity of data regarding the impact of epilepsy beyond the person with epilepsy (PWE). In particular, it is uncertain what the impact of epilepsy on marriage may be. We therefore performed a narrative review to evaluate work measuring the psychosocial effect of epilepsy on marriage.We reviewed the literature on epilepsy and marriage by searching PubMed (Medline) and EMBASE and thoroughly examining relevant bibliographies. Forty-two papers were identified that addressed the issue of the psychosocial effect of epilepsy on marriage.The different approaches used to assess the impact of epilepsy on marriage can be broadly grouped into three categories: assessment of the social effect of living with epilepsy, which includes the marital prospects of PWEs and how changes in martial status associate with seizure frequency; assessment of quality of life (QOL) of PWEs; assessment of the association of social support with the disease burden of epilepsy. Within each of these approaches, different research methods have been employed including questionnaires, qualitative methods, and scales.The studies reviewed indicate that epilepsy has a severe impact on individuals and their families. While many quality-of-life surveys do comment on the marital status of the patient, there is little expansion beyond this. The impact that seizures may have on the partner of a patient with epilepsy is barely addressed. With increasing incidence of epilepsy in older populations, potential changes in the dynamic of a long-term marriage with the development of epilepsy in older age are not known. Similarly, the impact of marriage on concordance with medication or proceeding to, for example, surgical treatment for pharmacoresistant epilepsy has not been studied in detail. We suggest ways in which to address these aspects in order to better deliver holistic care to patients with epilepsy and their partners.     

Prevalence and impact of irritable bowel syndrome in people with epilepsy

PurposeEpilepsy is known to be associated with affective disorders and sleep alterations, as well as with gastrointestinal conditions such as peptic ulcers and inflammatory bowel disease. There is comparatively little evidence linking epilepsy and gastrointestinal functional disorders. The objective of this study was to determine the prevalence and impact of irritable bowel syndrome (IBS) in patients with epilepsy.MethodsWe carried out a cross-sectional observational study on 65 consecutive people with epilepsy (PWE) and age- and sex-matched controls. Irritable bowel syndrome and functional dyspepsia (FD) diagnosis were based on Rome III criteria. Clinical and demographic characteristics were recorded, and instruments evaluating sleep quality, depressive/anxiety symptoms, insomnia, and health-related quality of life were also completed.ResultsIrritable bowel syndrome prevalence was significantly different between groups (3% in controls and 16% in patients with epilepsy; p = 0.04), while no difference was found in FD (2% vs. 6%, respectively). People with epilepsy with IBS had significantly more insomnia and depressive and anxiety symptoms. No demographic or clinical characteristics were significantly different between groups. The presence of IBS did not affect health-related quality of life in PWE. On multivariate analysis, insomnia and depressive and anxiety symptoms did not independently predict IBS diagnosis.ConclusionIrritable bowel syndrome was more frequent in PWE compared with that in healthy controls. Irritable bowel syndrome does not appear to affect health-related quality of life but is associated with a greater burden of affective symptoms and insomnia.     

Impact of choice of coping strategies and family functioning on psychosocial function of young people with epilepsy

Both medical and psychological factors have an important impact upon the psychosocial functioning of young people with epilepsy. The purpose of this study was to identify factors that distinguish young people with epilepsy and high psychosocial functioning from those with lower levels. The participants were 114 young people (40 males, 74 females) with active epilepsy and a mean age of 17.92 years (SD = 3.90) who completed either a paper (60.5%) or a web-based survey (39.5%) comprising demographic, medical, and psychosocial measures. Psychosocial measures included family functioning, adolescent coping, anxiety, depression, and quality of life. A latent class analysis produced two psychosocial functioning groups based on participants' scores for anxiety, depression, and quality of life. Young people were more likely to be members of the group with poor psychosocial functioning if they had a seizure in the last month (Wald = 5.63, p < .05), came from families with lower levels of communication and problem solving (Wald = 5.28, p < .05), and made greater use of non-productive (emotion-focused) coping strategies such as wishful thinking, withdrawal, and worry (Wald = 12.00, p < .01). The findings suggest that, in addition to standard medical treatment, clinicians may promote better outcomes by strengthening family functioning and encouraging less use of nonproductive coping strategies.     

Perceived stress and its predictors in people with epilepsy

ObjectivePerceived stress in people with epilepsy (PWE) is one of the major precipitants for seizures. We investigated the degree of perceived stress in PWE and its predictors. We also aimed to reveal the interrelationships among the predictors.MethodsThis was a case–control study. Consecutive patients visiting a tertiary care epilepsy clinic completed self-reported questionnaires including the Perceived Stress Scale (PSS), Revised Stigma Scale (RSS), Korean version of the Neurological Disorders Depression Inventory for Epilepsy (K-NDDI-E), Generalized Anxiety Disorder — 7 (GAD-7), and short forms of the Patient-Reported Outcomes Measurement Information System — Sleep Disturbance (PROMIS-SD) and Patient-Reported Outcomes Measurement Information System — Sleep-Related Impairment (PROMIS-SRI) scales.ResultsThe mean score of the PSS was significantly lower in patients with well-controlled epilepsy (WCE) and higher in those with uncontrolled epilepsy compared with controls. Although several factors including demographic, socioeconomic, psychosomatic, and epilepsy-related factors were associated with the PSS score, the strongest predictor for the PSS score was the K-NDDI-E score, followed by the PROMIS-SRI score, the GAD-7 score, and seizure control. Psychosomatic factors exerted both a direct effect on the PSS score and an indirect effect on the PSS score through seizure control.ConclusionRapid detection and appropriate management of psychiatric and sleep-related problems in PWE may lessen stress and aid in preventing further seizures.     

Self-reported anxiety and sleep problems in people with epilepsy and their association with quality of life

Comorbidities are common in epilepsy, and their role in quality of life (QOL) is receiving increasing scrutiny. Considerable attention has been focused on the role of depression, the most common comorbidity, with rather less attention paid to its frequent concomitant, anxiety, and other conditions known to be at increased prevalence among people with epilepsy (PWE) when compared to the general population. In this paper, we report findings from a UK-based survey in which we examined self-reporting of two common comorbidities, anxiety and sleep problems, factors associated with them, and their role in QOL in people with and without epilepsy.Data were obtained via mailed questionnaires, supplemented by an internet survey, from PWE and age- and gender-matched controls. Based on self-reported symptoms, PWE were at higher risk of anxiety and sleep problems. Contributory factors for anxiety included poorer general health, worry about seizures, and self-reported antiepileptic drug (AED) side effects. Good social support emerged as protective for anxiety in PWE. Nighttime sleep problems were very common even in controls but were further elevated in PWE. Antiepileptic drug adverse events emerged as an important contributory factor for sleep problems. Trait anxiety emerged as significant for defining overall QOL, and its importance over state anxiety supports the notion of anxiety in PWE as a primarily premorbid condition. In contrast, sleep quality was not consistently predictive of QOL. Our study has important implications for clinical management, emphasizing the need for a holistic approach to address wider patient-reported problems as well as any epilepsy-specific ones.     

Sleep disturbances in people with epilepsy; prevalence, impact and treatment

The interaction between epilepsy and sleep is thoroughly studied and is very complex. This review focuses on prevalence, impact on quality of life and effects of treatment of sleep disorders on the course of epilepsy. Self-reported sleep disturbances in people with epilepsy are about twice as prevalent as in healthy controls. People with epilepsy with sleep disturbances have a significant impairment of quality of life compared to those with no sleep disturbances. In children with epilepsy, sleep problems may lead to detrimental effects on daytime behavior and cognition.Most is known about obstructive sleep apnea syndrome (OSAS). Co-morbidity of epilepsy and OSAS is shown to be far higher than expected by chance. Treatment of OSAS significantly improves seizure control in people with epilepsy. More studies on the prevalence of other sleep disorders in people with epilepsy and the effect of treatment are required. Reports on the effect of treatment for other sleep disorders are scarce and not unequivocal.     

Social competence of people with epilepsy: a new methodological approach

A new multivariate method, a stepwise cumulative regression analysis, which allows a polychotomous outcome variable was used to analyse a representative population sample of children with epilepsy as adults, after a follow-up of 30 years from onset of seizures. On follow-up, 63% of subjects had been in terminal remission for ≫ 3 years and 48% were both seizure-free and off medication. More than a half (58%) felt completely independent in daily activities and almost as many (57%) were successfully employed. Good communication ability, good intelligence and seizure freedom were significant predictors of a good social competence.     

The impact of epilepsy on the quality of life of people with epilepsy in Zimbabwe: a pilot study.

Epilepsy is a common cause of psychosocial disability and has been perceived to have a profound impact on the social functioning of individuals with epilepsy. In Zimbabwe a combination of developing world economic priorities (with provision of social and health services for disabled people not a major goal) and culturally mediated perceptions of epilepsy as a non-medical and feared stigma may further disadvantage people with epilepsy (PWE) in this respect. In order to assess both the level of psychosocial functioning of individuals with epilepsy and their own perception of it, three groups of people were sampled: attenders at a specialized epilepsy clinic and members of two community-based support groups. All completed a brief quality-of-life questionnaire with activities of daily living added. Those carers present completed the same questionnaire at the time of sampling. The results indicated that 36 of 38 people with epilepsy sampled, and their carers, did not perceive themselves to have sufficient cognitive impairment to interfere with social functioning, work performance or relationships with other as assessed by a subsection of the WHO SIDAM (objective evaluation of cognitive performance) interview. However, an adapted activities of daily Living Questionnaire (ADLQ) showed that three-quarters of carers (and two-thirds of PWE) felt that functioning was mildly to moderately reduced, particularly in the areas of solving daily problems and speed of thinking. One-quarter of PWE experienced problems with relationships to others, just less than one-fifth of PWE reported more than four areas of reduced functioning. Of special interest was the fact that 25 (66%) reported sexual functioning as not applicable, although only four of these were of an age group which is not sexually active (less than 15 years old). In addition one-third of the central Hospital Group reported difficulties with using public transport, but none of the Community Support Group members, implying that the use of Public transport becomes an issue when it is necessary to travel long distances and that PWE curtail their travel but do not necessarily view this as a restriction. The samples chosen were from groups which, compared with PWE as a whole, are likely to include more disabled individuals, because attenders at a specialized epilepsy clinic and members of support groups self-select for more symptomatic epilepsy and a visibility. Therefore the proportion of PWE perceived to have difficulties with ADL in this project is not representative for PWE as a whole. The implications of our study are firstly that there is a significant need for selected groups of PWE in Zimbabwe to receive attention to psychosocial abilities and secondly that there are certain specific areas such as sexual functioning and the use of transport which deserve special attention. A much more detailed inventory of neuro-psychological tests will be of value to plan treatment strategies for those selected by the crude screening instruments used in this project. An important future comparison will be a survey of ADL and psychosocial functioning amongst PWE in rural communities, because it is uncertain whether PWE in rural communities are generally more or less disabled than those in the city.     

Social anxiety and self-concept in children with epilepsy: A pilot intervention study

PurposeThe purpose of this study was to assess the impact of a cognitive behavioral therapy (CBT) anxiety intervention on social phobia, social skill development, and self-concept.MethodFifteen children with epilepsy and a primary anxiety disorder participated in a CBT intervention for 12 weeks plus a 3-month follow-up visit. Children were assessed at baseline, week 7, week 12, and 3 months post treatment to measure changes in social phobia using the Screen for Child Anxiety Related Emotional Disorders (SCARED). Self-concept was also assessed by using the Piers-Harris Children's Self-Concept Scale II (Piers-Harris 2).ResultsThere was a significant reduction in symptoms of social phobia and improved self-concept at the end of the 12-week intervention and at the 3 month follow-up. Repeated measures ANOVA's of child ratings revealed significant change over time on the SCARED-Social Phobia/Social Anxiety subscale score (p = 0.024). In terms of self-concept, significant change over time was detected on the Piers-Harris 2-Total score (p = 0.015) and several subscale scores of Piers-Harris 2, including: Physical Appearance and Attributes (p = 0.016), Freedom from Anxiety (p = 0.005), and Popularity (p = 0.003).ConclusionThis pilot investigation utilized an evidenced based CBT intervention to reduce symptoms of social phobia, which in turn provided a vehicle to address specific social skills improving self-concept in children with epilepsy.