Have attitudes toward epilepsy improved in Germany over the last 50 years?

OBJECTIVE: In Germany, six previous representative surveys on attitudes toward epilepsy (AE) have been conducted between 1967 and 2008 using the four original Caveness questions (CQs) from 1949 to 1980. The aims of this study were (1) to investigate changes in AE over the time span of 50 years, including the current survey in 2018 (2) to investigate the first-time emotional reactions measured with the Scales of Attitudes toward People with Epilepsy (SAPE) (3) to identify predictors of AE. METHODS: A representative face-to-face survey with CQ, in addition with the SAPE scales of Social Distance, Stereotypes, Personal Concerns, and Emotional Reactions was carried out in Germany in 2018. One thousand and twenty-six persons who ever had heard of epilepsy participated. Respondents who answered "don't know" in the CQs were subsequently asked to answer only yes/no. The analysis of trends from 1967 to 2018 was based on the pooled data of the surveys. The four CQs in the 2018 survey were included in the SAPE item pool and an exploratory principal axis factor analysis was performed. General linear models were performed to identify predictors. RESULTS: For all four CQs, the trend of improved AE was significant over the past 50 years. In the 2018 survey, excluding the "don't know" answer option increased the proportion of negative responses for contact of one's own children with a person with epilepsy (PWE) from 6.9% to 11.4% and for the marriage of one's own children with a PWE from 13.9% to 23.8%. When encountering a PWE, 30.1% would feel insecure or uncomfortable and nearly 60% were concerned that the PWE might be injured in case of a seizure. Knowing what to do in case of a seizure, knowing that seizures can be treated successfully, personal contact with a PWE along with younger age, and higher education were found to be the strongest predictors for positive AE identified by multivariate analyses. Exploratory principal axis factor analysis revealed that three of the four CQs items loaded > 0.30 at the factors of Social Distance and Stereotypes of SAPE but none on the factors measuring emotional reactions. SIGNIFICANCE: AE measured by CQs have markedly improved in Germany over the last 50 years. Germany is to our knowledge the only country with such a long-term trend investigation in AE. Negative AE may be underestimated by survey questions with "don't know" answer option. Emotional aspects of attitudes are underexposed resp. neglected in the CQs, which are used worldwide for measuring AE. Additional tools like SAPE can close this gap. The identified predictors may help to derive interventions against negative AE.

Attitudes toward epilepsy assessed by the SAPE questionnaire in Germany - Comparison of its psychometric properties and results in a web-based vs. face-to-face survey.

OBJECTIVE: The aims of this study were (1) to investigate psychometric properties of a new questionnaire (SAPE, Scales of the Attitudes toward People with Epilepsy) that assesses attitudes toward people with epilepsy (PWE) (2) to compare the effects of mode of survey administration (web-based vs. face-to-face) on attitudes, and (3) to identify predictors of attitudes. METHODS: A face-to-face and a web-based survey were performed in Germany. Weighting factors were used to achieve representative samples of the German population. Reliability and validity of the 6 scales of the SAPE (social distance, stereotypes, personal concerns, and emotional reactions differentiated by fear, anger, and pity) were evaluated and compared for both surveys. Epilepsy knowledge was also assessed. General linear models were performed to investigate predictors of attitudes toward PWE including the type of survey. RESULTS: In total, 1001 participants of the web-based survey and 1026 participants of face-to-face survey were included. Psychometric analyses indicated satisfactory reliability and validity of the scales and differed only slightly between modes of survey. In both surveys, fears and concerns were more pronounced than stereotypes and social distance. However, mean values of two scales were slightly or moderately higher in the face-to-face survey indicating more negative attitudes toward PWE (p < 0.001). Fewer participants of the face-to-face survey reported personal experience with PWE, claiming to know what to do in case of a seizure and claiming to know that seizures can be treated successfully (p < 0.001). These variables proved to be important predictors of positive attitudes toward PWE, besides demographic factors (e.g. age < 65, female gender). When controlling for them, the differences remained significant only for the scales Social Distance (moderately) and Fear (slightly). SIGNIFICANCE: In total, psychometric analyses show that web-based surveys using the SAPE may be an alternative to face-to-face surveys to assess attitudes toward PWE. This applies also to the scales Social Distance and Emotional Reactions that allow comparisons with other diseases, e.g. psychiatric disorders. Most scales differ only slightly between survey modes, except social distance. This indicates that single components of attitudes toward PWE may be dependent on the mode of survey or different characteristics of respondents.

Effects of a specialized inpatient treatment program on epilepsy-related impairments of patients with epilepsy and intellectual disability as rated by relatives and professional caregivers.

INTRODUCTION: The aim of the study was to determine the impact of a comprehensive inpatient treatment program for persons with epilepsy and intellectual disability (ID) on the concerns of relatives and caregivers, quality of life (QoL), and global health and clinical aspects, assessed by a questionnaire for relatives and caregivers. METHODS: We performed an open, controlled pre/post study in inpatients with epilepsy and ID or acquired brain damage treated for at least 14 days in a tertiary referral center for epilepsy. Questionnaires were administered to relatives/professional caregivers shortly before admission and 6 months after discharge for the treatment group (TG). The control group (CG) was recruited from the waiting list; questionnaires were answered at the time of application for treatment and 3-6 months later. The questionnaire was the GEOS-43G, the German version of the Glasgow Epilepsy Outcome Scale (GEOS-35), which was extended by eight additional questions from the GEOS-90. Furthermore, QoL, global health, and clinical aspects were assessed using a short questionnaire. Generalized estimation equations (GEEs) were used for statistical analyses. RESULTS: One-hundred and eight subjects were evaluable in the TG, and 90 in the CG. Concerns about seizures, injuries/risks, medical treatment, diagnostic issues, and the GEOS-43G total score decreased significantly in the TG in contrast to the CG. For the TG, improvements were also significant for global QoL, global health, efficacy, tolerability of AEDs, and for seizure frequency. Caregivers reported larger improvements compared to relatives. CONCLUSION: The evaluation of the relatives and caregivers in our study indicates that inpatient treatment in a specialized center with a dedicated multi-professional program led to significant improvements regarding the concerns of relatives or caregivers, and in the QoL and related aspects in persons with epilepsy and ID. This shows that specialized inpatient treatment may be helpful for persons with epilepsy and ID.

Effects of an inpatient rehabilitation program after temporal lobe epilepsy surgery and other factors on employment 2 years after epilepsy surgery.

OBJECTIVE: To evaluate the effects of a postsurgical rehabilitation program on employment status 2 years after temporal lobe epilepsy surgery in relation to other predictors. METHODS: Employment outcome 2 years after temporal lobe resection in a group of 232 adult patients with the offer of a 3-week inpatient rehabilitation program immediately after surgery ("Reha group") was compared to a group of 119 patients who had surgery before such a rehabilitation program existed. One hundred thirty-nine (59.9%) of the Reha group patients attended the rehabilitation program. Further predictors for employment outcome were analyzed using multivariate logistic regression analysis. RESULTS: Preoperatively, the groups did not differ significantly in variables relevant for employment, including employment rate. Two years after surgery, the rate of those not being employed had decreased in the Reha group from 38.4% to 27.6% (p < 0.001, McNemar test), and slightly increased in the control group (37.8-42.0%; n.s.), resulting in a difference of 14.4% in favor of the Reha group (p = 0.008). General unemployment rates during the two observation periods were similar. In addition to the offer of rehabilitation support ("Reha group") and preoperative employment, the following other variables were shown as significant predictors of employment post surgery in multivariate regression analysis: seizure outcome, diagnosis of a personality disorder preoperatively, and age at surgery (all, p < 0.01; Nagelkerkes R(2) = 0.59). SIGNIFICANCE: Independently from other factors, a 3-week inpatient rehabilitation program after temporal lobe epilepsy surgery seems to improve employment status 2 years after surgery.

Validation of the Japanese version of the scales of the attitudes toward people with epilepsy (SAPE-J).

OBJECTIVE: The aims of this study were to translate the SAPE questionnaire (Scales of the Attitudes toward People with Epilepsy) questionnaire developed in Germany that assesses attitudes toward people with epilepsy (PWE) into Japanese and to examine its reliability and validity. METHODS: We crafted the Japanese version of SAPE (SAPE-J) by drawing upon the original German version. On May 22nd and 23rd, 2023, we surveyed the general public registered with an online research survey service (Cross Marketing Group Inc., Tokyo, Japan) using an online questionnaire. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in Japanese, and the ability to comprehend the Japanese questionnaires. In addition to the translated SAPE-J, we asked about knowledge of epilepsy, personal experience with epilepsy, and gathered information about age, gender, employment status, education level, marital status, and household income in accordance with the validation of the German version of the SAPE. RESULTS: 400 adults from the general public who had heard or read about epilepsy were asked to participate, granted informed consent, and completed the study questionnaire. The SAPE-J questionnaire has 6 scales: 1. Social Distance; 2. Stereotypes; 3. Concerns when encountering a person with epilepsy (PWE) and emotional reactions differentiated by 4.1 Fear, 4.2. Anger, and 4.3 Pity; with a total of 26 items. The reliability of these scales ranged between acceptable to high (Cronbach's alpha 0.74-0.92) and confirmatory factor analyses (CFA) confirmed the presumed six-factor structure of the SAPE (factorial validity). Multivariate generalized linear models (GLM) were used to investigate the construct validity and showed that, depending on subscale, different variables such as age, gender, education level, personal contact to PWE, and epilepsy specific knowledge were significant predictors of attitudes. SIGNIFICANCE: The Japanese version of the SAPE proved reliable and valid for assessing attitudes toward PWE in the Japanese public. Increasing understanding about how to deal with and accept persons with epilepsy may help reduce negative attitudes and fears about the condition. PLAIN LANGUAGE SUMMARY: The study translated the German SAPE questionnaire, which measures attitudes toward people with epilepsy (PWE), into Japanese and tested its reliability and validity. The Japanese version (SAPE-J) was created and surveyed online among 400 adults in Japan. The SAPE-J has 6 scales covering social distance, stereotypes, and emotional reactions like fear, anger, and pity. Reliability was high (Cronbach's alpha 0.74-0.92), and factor analyses confirmed its structure. The study found age, gender, education, and personal contact with PWE influenced attitudes. The SAPE-J is reliable and valid for assessing attitudes toward PWE in Japan, potentially reducing negative views and fears about epilepsy.

Determinants of quality of life in patients with refractory focal epilepsy who were not eligible for surgery or who rejected surgery.

UNLABELLED: The aim of the study was to assess the determinants of quality of life (QOL) in adult patients with refractory focal epilepsy who were not eligible for surgery or who rejected surgery after presurgical evaluation. The QOLIE-31, the Hospital Anxiety and Depression Scale and PESOS questionnaire were mailed in 2009 to all adult patients who had been evaluated for suitability for epilepsy surgery between 2001 and 2007 in the Bethel Epilepsy Center and had been deemed not eligible for surgery or had decided against surgery. Questionnaires were sent by post to 359 patients: 172 (47.9%) replied, and of these, 125 patients were eligible for this study. The remaining 47 patients were excluded mainly because they did not fulfill the criteria of refractory epilepsy. Out of the included 125 patients, 106 were considered to be poor surgical candidates for medical reasons, and 19 had decided against surgery. The mean follow-up was 4.1±2.1 years. In the past 6 months, 13.9% of the patients were seizure free, 12 of them (9.6%) were seizure free for one year, 10.7% had 1-2 seizures, 11.5% had 3-5 seizures, 27.0% had one or more seizures a month, 23.0% had one or more seizures a week, and 13.9% had one or more seizures a day. Patient-perceived changes in their seizures since presurgical evaluation were rated by 15.6% of the patients as 'improved significantly', by 28.7% as 'improved', by 46.7% as 'no change', by 6.6% as 'deteriorated' and by 2.5% as 'significantly deteriorated'. Quality of life in patients with refractory epilepsy was much lower compared to operated patients from our center. Multivariate analysis of QOL showed that depression and anxiety are strong predictors but not exclusively. Furthermore, tolerability and efficacy of AEDs are significant predictors of most QOLIE-31 subscales. Employment, seizure frequency, patient-perceived change in their seizures, number of AEDs and the degree of comorbidity appeared as predictors for some aspects of QOL as well. When excluding anxiety and depression, the most important predictors of QOL were tolerability of AEDs and employment. For other aspects of QOL, efficacy of AEDs, gender, number of AEDs, degree of comorbidity and a certificate of disability were additional predictors. The results of the multivariate analysis did not essentially change when seizure-free patients were excluded. CONCLUSION: Quality of life in non-operated patients with refractory epilepsy is significantly lower than in operated patients from the same center. Besides depression and anxiety, patient-rated tolerability and efficacy of AEDs, seizure frequency and employment are the main determinants of QOL.

Should patients with psychogenic nonepileptic seizures be allowed to drive? Recommendations of German experts.

In the absence of evidence-based regulations on the driving ability of patients with psychogenic nonepileptic seizures (PNES), we asked 41 German epileptologists via e-mail for their recommendations on driving with PNES. This survey was modeled on an earlier study by Benbadis et al. in the United States and was compared with it. Thirty-four (82.9%) epileptologists responded. Three responses were possible: (A) same restrictions as stipulated for patients with epilepsy, answered by 11 epileptologists (32.4%); (B) no restrictions at all, which no German expert gave as an answer (0%); (C) decision on an individual basis, answered by 23 experts (67.6%). The divergent approaches reflect the poor data on motor vehicle accidents of patients with PNES and the great variability of PNES with respect to semiology, psychiatric morbidity, and prognosis. In the study by Benbadis et al., 49% chose A, 32% B, and 19% C. The considerable national differences may be explained by differences between the two countries with respect to driving regulations and cultural aspects.

Predictors of quality of life after resective extratemporal epilepsy surgery in adults in long-term follow-up.

PURPOSE: To present long-term outcome and predictors of the health related quality of life (HRQOL) in a large group of patients operated for refractory extratemporal epilepsy. METHODS: A German QOLIE-31 questionnaire and additional questions has been mailed for all adult patients operated for extratemporal epilepsy in the Bethel Epilepsy Centre, between 1992 and 2003, 87 patients were eligible for this study. RESULTS: Seizure freedom, intake of antiepileptic drugs (AEDs), presence of AEDs side effect medical comorbidities and driving a car were significantly correlated to HRQOL in all subscales of QOLIE-31. Gender, age at epilepsy onset, the presence of a partner, psychiatric disease, the presence of auras and tumour pathology have a correlation to QOL in some subscales. Stepwise regression for all patients revealed that seizure freedom and medical comorbidities were highly predictive for most of the subscales of QOLIE-31. Intake of anti-epileptic drugs and AED side effects had a modest effect on QOL. The need for psychiatric treatment predicted poor cognitive function scores. Epilepsy onset at an older age predicted a minimal increase in the overall health scores. An aura at the last follow-up predicted poor medication scores. Regarding the importance of the predictors, seizure freedom and medical comorbidities were the most important predictors of QOL after surgery. AED intake and side effects had an intermediate effect on QOL; however, the gender of the patient and age at epilepsy onset had a minimal effect on QOL. CONCLUSIONS: HRQOL after extratemporal epilepsy surgery has multiple determinants. Medical comorbidities should be considered a negative risk factor for QOL during preoperative and postoperative evaluation process.

Long-term outcome and determinants of quality of life after temporal lobe epilepsy surgery in adults.

AIM OF THE STUDY: To find determinants of quality of life (QOL) in long-term follow-up after temporal lobe epilepsy (TLE) surgery in adults. METHODS: The QOLIE-31 questionnaire was sent to 400 of 524 patients who were operated on for refractory TLE between 1991 and 2003 in the Bethel Epilepsy Centre fulfilling the inclusion criteria of this study. Mainly patients with severe cognitive deficits and patients with progressive brain disorders were excluded. There were 222/400 patients who replied to the QOLIE-31 questionnaire and 147/222 of these patients replied to an additional questionnaire. RESULTS: Univariate analyses showed that seizure freedom, presence of auras, intake of antiepileptic drugs (AEDs), severity of AED side effects, and driving a car were significantly correlated with all subscales of QOLIE-31. Furthermore, employment status, psychiatric problems, tumors and hippocampus sclerosis pathology, the presence of a partner, age at reply, age at surgery and medical co-morbidities were significantly correlated with some subscales of the QOLIE-31. Multivariate analyses (stepwise regression analyses) revealed that especially the time since the last seizure and the severity of AED side effects had a strong impact on QOL. However, aura at last follow-up, psychiatric treatment and employment were seen in the multivariate analyses as significant predictors of some QOL subscales as well. Most subscales of QOL showed a steep, non-linear increase within the first years of seizure freedom and remained relatively stable except for cognitive function which showed continuous improvement parallel to seizure freedom. For patients who were seizure free since surgery, side effects of AED and/or psychiatric treatment were the strongest determinants of QOL. CONCLUSION: Duration of seizure freedom and AED side effects have the strongest impact on QOL in the long-term follow-up. Therefore it is important not only to register intake of AEDs but also to assess side effects of AEDs. Persistence of auras also had an impact on different facets of QOL, but was significantly correlated with intake of AEDs. Apart from factors directly related to epilepsy QOL was dependent of psychosocial factors as employment status, psychiatric complications, and driving a car underlining the necessity of postoperative rehabilitation in this group.