Validity and reliability study of the turkish version epilepsy self-stigma scale (ESSS-T).

AIM: We translated the Epilepsy Self-stigma Scale (ESSS) into Turkish and aimed to examine the Turkish version ESSS (ESSS-T) validity and reliability. MATERIALS AND METHOD: From April to August 2023, patients with epilepsy (PWE) were recruited from the neurology outpatient clinic of Ataturk University Hospital in the eastern Turkish city of Erzurum (inclusion criteria: age 18 years or older and adequate reading and speaking ability in Turkish). We conducted our survey using a self-administered questionnaire. The questionnaire consisted of the ESSS-T after appropriate translation by back-translation, and self-esteem (the Rosenberg's Self-Esteem Scale, RSES), depression (the Neurological Disorders Depression Inventory for Epilepsy, NDDI-E), and general stigma (the Stigma Scale for Epilepsy, ESE) for construct validity. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to test factorial validity. Also, Cronbach's alpha coefficient was calculated to verify reliability. RESULTS: Of the 126 patients, 106 agreed to give informed consent and responded to the questionnaire (84.1 % response rate). The results of EFA suggested the same three-factor structure as in the original version, but CFA showed some limitations in interpreting the three-factor structure and it may be safer to understand it as a unifactorial structure. The alpha coefficients were also validated by the ESSS-T. The alpha coefficients were α = 0.74 for the ESSS-T scale as a whole and α = 0.69-0.74 for each subscale, which were generally acceptable values. CONCLUSION: The Turkish version of the ESSS proved valid and reliable. It is a measurement tool with a three-dimensional structure. It can be used to assess the self-stigmatization of patients with epilepsy in Turkey.

An online survey on differences in knowledge and stigma about epilepsy among the Tokyo metropolitan area and non-urban areas in Japan, a post-hoc study.

PURPOSE: Extant research elucidating the domains of knowledge and bias on epilepsy has consistently underscored a deficiency in cognizance and an inclination toward bias within non-urban areas. Investigations into geographical disparities concerning epilepsy awareness and prejudice within the Japanese context remain conspicuously absent. To address this lacuna in the literature, we undertook a post-hoc analysis to elucidate the discernible regional differentials in epilepsy awareness and the associated stigma. METHODS: From July to August 2021, we conducted an internet questionnaire survey for 310 people with epilepsy (PWE) and 213 ordinary people without epilepsy who registered on the database of the Japanese Research Company. We inquired PWE to answer the Epilepsy Self-Stigma Scale (ESSS), the Rosenberg Self-Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We inquired to answer ordinary people without epilepsy EKS. We analyzed residential addresses separately for Greater Tokyo and non-urban areas by comparing the degree of knowledge of people with epilepsy and people without epilepsy. RESULTS: The average knowledge of people with and without epilepsy in the Greater Tokyo area was 39.60 and 28.43 points, although in non-urban areas (nine regions from all over Japan except for the Greater Tokyo, Tokai region, and Kinki region), the knowledge averages were 38.44 and 28.66 points of 100. In addition, self-stigma was highest in the Greater Tokyo area: 22.99 and in non-urban areas: 22.77. An two-way ANOVA with knowledge as the dependent variable and epilepsy diagnosis status and region (Greater Tokyo area/non-urban areas) as the independent variables revealed no interaction between diagnosis and region (F(1,346) = 1.48, η2 = 0.003). Knowledge was significantly higher in PWE than in people without epilepsy, but we could not identify any significant difference between ESSS (t = 0.24, d = 0.03) and RSES (t = 1.16, d = 0.16) in the Greater Tokyo/non-urban areas. CONCLUSIONS: We obtained specific information about regional differences in the level of knowledge and stigma about epilepsy in Japan. Because Japan underwent educational reforms after World War II and more than 90% of the population received equally advanced education, the results found no regional differences in knowledge and stigma about epilepsy. We believe collecting information about the respondents' birth and upbringing environment and conducting a thorough investigation is necessary in the future.

Pilot trial of "Epi-school" group psychosocial education program for patients with epilepsy and their relatives in Japan.

INTRODUCTION: In epilepsy treatment, it is important for patients with epilepsy (PWE) to have accurate knowledge of epilepsy and to actively engage in treatment. In Japan, there are a few facilities for implementing learning programs for PWE, and their long-term usefulness has not been established. We conducted a pilot group psychosocial education program for PWE and their relatives in Japan. METHODS: Participants were PWE and their relatives who were 18 years old or older, were able to consent to participate in the study, and who were visiting the outpatient clinic of Saitama Medical Center from September 2019 to March 2020. As an intervention, we created a psychosocial educational program called "Epi-school" for PWE and their relatives, consisting of three sessions. Outcomes included patients' quality of life (QOL) measured with the epilepsy-31-P (QOLIE-31P), Rosenberg self-esteem scale (RSES), Stigma scale for chronic neurological disease (SSCI-8), and Epilepsy knowledge scale, before and after Epi-school. In addition, in a free-form questionnaire, we collected the impressions of patients and their relatives regarding the experience of participating in a group psychosocial education program. RESULTS: We examined 11 patients (two males, nine females) and 12 relatives (four males, eight females) who participated in Epi-school during the target period. The analyses revealed that only the scales measuring knowledge about epilepsy in the effect index showed significant increases in both patients and relatives after the program compared with before the program (patients: F [1,5.30] = 13.65, P < .05; relatives: F [1,4] = 17.50, P < .05). Moreover, a large effect size (d = 0.85) was obtained in patients, and a large effect size (d = 1.03) was obtained in relatives. In the open-ended questionnaire after participating in Epi-school, respondents reported changes in the psychological state of patients in the "learning epilepsy knowledge and coping methods", including changes in "acquired knowledge of illness" and "acquisition of coping with psychological aspects". Furthermore, it reports of "discovery/surprise", "thanks to medical staff", "interaction with other patients/relatives", and "new anxiety". In addition, "positive thoughts on treatment", "hopes for the future", "expectations for interaction with medical staff", "expectations for interaction with colleagues with the same disease", and "coming out of epilepsy" were reported. Regarding the psychological state of relatives after participating in Epi-school, it revealed "thanks to medical staff", "interactions with other patients/relatives", and "awareness of and remarks about other patients' statements". The results also revealed responses including "positive thoughts about treatment", "expectations of medical care", and "expectations of the community". DISCUSSION: The results confirmed that Epi-school led to improved knowledge, and psychological changes, including improved QOL and positive acceptance of epilepsy. Participants' awareness about epilepsy appeared to improve through encounters with other participants' attitudes toward epilepsy, possibly changing via the ways participants interacted. It is important to promote understanding of epilepsy, enhance the effects of treatment, and reduce psychosocial restrictions. CONCLUSIONS: Epi-school may be useful as part of epilepsy treatment to improve the QOL of PWE by making it easier for patients and their relatives to develop acceptance of living with epilepsy. The main limitation in the current study was the small sample size and the lack of a control group. In future studies, we plan to further investigate the usefulness of psychosocial education programs in Japan, including Epi-school, by increasing the sample size, including a control comparison, and collecting more comprehensive data. We hope that the current findings will encourage the provision of appropriate medical insurance funding for patient learning programs in Japan.

One-day psychosocial education program for people with epilepsy: A continuation study of the "Epi-school".

Psychosocial education programs for people with epilepsy (PWE) can improve epilepsy knowledge and quality of life (QOL), whereas the availability of these programs is limited in Japan compared to other developed countries. This study evaluated the feasibility and effectiveness of a one-day group psychosocial education program named the "one-day Epi-school" for PWE and their relatives. The previous program (Epi-school) required consistent participation in three sessions, resulting in problems with program continuation rates, with 45.5% of PWE completing the program. Therefore, the "one-day Epi-school" was designed to provide information about epilepsy and address psychosocial issues related to coexisting epilepsy symptoms, such as self-stigma and self-esteem, while allowing participants to accomplish these programs within a single day. The study recruited a sample of 32 PWE and their relatives from a psychiatric clinic. They completed assessments of knowledge, self-stigma, self-esteem, and quality of life before and after the program. The results exhibited a significant increase in epilepsy knowledge after the intervention for PWE and their relatives. However, we could not identify other significant changes. The participation completion rate was 100%. The post-participation questionnaire proved beneficial to interact with other PWE. The study suggests that a single intervention, e.g., the one-day Epi-school, may be insufficient for enhancing other factors, yet it can be an adequate opportunity for learning and interacting. It is also necessary to implement future studies with larger sample sizes, a control group, and prolonged follow-up periods for the program's value and validity.

Assessment of self-stigma in epilepsy: Validation of the German version Epilepsy Self-Stigma Scale (ESSS-G).

OBJECTIVE: Self-stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self-stigma have low self-esteem and are less likely to engage in treatment behavior. The Epilepsy Self-Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity. METHODS: We created the German version of ESSS (ESSS-G) based on the original Japanese version. From May to October 2022, we recruited out- and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self-Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Generalized Anxiety Disorder 7 (GAD-7), Epilepsy Knowledge Scale, and items on "overall quality of life (QOL)" and "overall health" (items from QOLIE-31). RESULTS: One hundred twenty-eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD-7, r = 0.54, P < 0.001) and depression (NDDI-E, r = 0.45, P < 0.001), lower self-esteem (RSES, r = -0.41, P < 0.001), overall QOL (r = -0.40, P < 0.001), and overall health (r = -0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self-stigma. SIGNIFICANCE: The German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self-stigma and conducting intercultural comparisons of epilepsy self-stigma.

Association between psychotropic prescriptions and the total amount of psychotropics ingested during an intentional overdose: A single-center retrospective study.

AIM: To investigate the association between psychotropic prescriptions and the total amount of psychotropics ingested during a subsequent intentional overdose and to examine factors related to the number of psychotropic prescriptions. METHODS: The initial sample comprised 69 patients who were admitted to the emergency department of a general hospital in Japan following an intentional overdose via psychotropic medications. We performed retrospective hierarchical multiple regression analysis with the total amount of psychotropics ingested at the overdose as a dependent variable and factors related to deliberate self-harm or overdose identified in previous studies as independent variables. We compared two models, one that did not (Step 1) and one that did (Step 2) include the number of different prescribed psychotropic medications as an independent variable in the analysis. RESULTS: Forty-seven patients were eligible for the analysis. The number of different prescribed psychotropic medications was associated with the total amount of psychotropics ingested at the overdose in Step 2 (ß = 0.40, P = .01). There was a trend toward an association between the past number of deliberate self-harm events and the total amount of psychotropics ingested at the overdose in Step 1 (ß = 0.30, P = .05), but this trend was weakened in Step 2 (ß = 0.15, P = .33). CONCLUSION: The number of different prescribed psychotropics appeared to influence the risk of subsequent intentional overdose through increasing the total amount of psychotropics ingested. Cumulative psychotropic prescriptions, particularly those delivered after deliberate self-harm, might be indirectly related to this risk.

A study of factors influencing self-stigma in people with epilepsy: A nationwide online questionnaire survey in Japan.

OBJECTIVE: Epilepsy carries a significant stigma. While there is some evidence that self-stigma accompanies a lack of knowledge about epilepsy, there are no studies in Japan. This study aimed to determine factors contributing to self-stigma in Japan. METHODS: We conducted an online questionnaire survey. Three hundred and ten patients completed the questionnaire (mean age of 47.8 ± 11.9) in contrast to the total registered users on the questionnaire site as 28 315 from Jul 29 to Aug 2, 2021. We asked about demographic variables, satisfaction with treatment, limitations in life, support status, seizure frequency, the Epilepsy Self-Stigma Scale (ESSS), the Rosenberg Self-Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We conducted the statistical analysis on self-stigma, self-esteem, knowledge of epilepsy, and seizure frequency associations by Spearman's rank correlation. RESULTS: The mean value of the EKS was 40.19 ± 18.75, the ESSS was 17.69 ± 6.25, and the RSES was 26.02 ± 6.13. We identified a significant moderate negative correlation between self-esteem and self-stigma (P < .001, ρ = -.423), a significant weak positive correlation between self-esteem and knowledge (P = .005, ρ = .177), and a significant weak negative correlation between seizure frequency and self-stigma (P < .001, ρ = -.162). Of the 186 respondents who were working or studying, 91 (49%) participants had experienced any discrimination due to epilepsy. The use of psychosocial support, that is, participating in epilepsy self-help groups and educational programs, was 5.8%. SIGNIFICANCE: There was no correlation between the strength of self-stigma and the knowledge, while there was a positive correlation between self-esteem and knowledge (P = .005, ρ = .177). There was a negative and weak correlation between seizure frequency and self-stigma (p < .001, ρ = -.162). These results suggest that sufficient knowledge may improve the self-esteem and thus reduce the self-stigma. In addition, short-term treatment for seizure control is insufficient to reduce self-stigma. The dissemination for people to enable sufficient epilepsy knowledge and positive perceptions of epilepsy by increasing self-efficacy throughout a lifetime may reduce self-stigma.

Internet survey on knowledge and perceptions of epilepsy among the general public in Japan.

Objective: To improve the life quality of people with epilepsy, it is necessary to provide comprehensive epilepsy care and disseminate accurate information related to epilepsy to the public. In Japan, reports of traffic accidents involving people with epilepsy started to draw attention in the media in 2011. Ever since that, the association between the image of epilepsy from the general public, "Epilepsy," and "Danger," was more robust in 2013. Since 2017, no previous surveys have examined the perceptions and knowledge of epilepsy among the public in Japan. As an essential source of information for epilepsy care, we conducted a nationwide Internet-based survey to elucidate the current state of knowledge and perceptions of epilepsy among the public without epilepsy in Japan. Methods: We conducted an online survey from July 29 to August 2, 2021, with 213 respondents (115 male, 97 female, and one unidentified; mean age: 50.52 ± 12.34 years) registered with an online survey service in Japan. In this survey, we first questioned whether or not a respondent had epilepsy, and then those with epilepsy were excluded from participation. We collected basic demographic information, administered the Epilepsy Knowledge Scale (18 items), and asked the open-ended response question, "What kind of disease do you think epilepsy is? If you do not know, please describe epilepsy in your words." We adopted quantitative text analysis using KH Coder3 and co-occurrence network analysis to examine the connections between words. Results: Among the respondents, 92% have heard of epilepsy, and 26.8% have observed an epileptic seizure before the survey. The knowledge scale yields an average score of 27.96 ± 21.3 (out of 100), with the question with the highest percentage of correct responses being "People with epilepsy are just as capable as other people" at 51.64%. The question with the lowest percentage of correct responses was "If the person with epilepsy only has seizures during sleep, the person can have a driver's license," at 9.85%. The average number of Japanese characters responding to open-ended text questions was 10.45 ± 8.87 characters (including Kanji, Hiragana, and Katakana). We found that the word "froth" appeared more frequently with experience of observing a seizure, and the words "occur" and "brain" appeared more frequently with higher knowledge of epilepsy. Furthermore, comparing the sources of information from what they learned about epilepsy, the words "seizure," "faint," and "consciousness" appeared more frequently in school, with family and friends, and in newspapers and television, respectively. Conclusion: We identified the level of knowledge and perceptions of epilepsy among the general public in Japan in 2021. By analyzing the qualitative aspects of open-ended text responses, we gathered information that might be useful for informing the public of future efforts to provide accurate information related to epilepsy.

Development and validation of the Epilepsy Self-Stigma Scale.

OBJECTIVE: Self-stigma is the internalization of negative public attitudes and is often experienced by patients with epilepsy (PWE). Greater self-stigma is associated with lower self-esteem and hinders therapeutic behavior. The study aims were to develop the Epilepsy Self-Stigma Scale (ESSS) to assess self-stigma in PWE and to examine the scale's reliability and validity. METHODS: We created a test scale based on items from an existing stigma scale and the results of a previous qualitative analysis we conducted. We recruited 200 outpatients from departments specializing in epilepsy (psychiatry, neurology, and pediatric neurology) at four facilities in Tokyo and Saitama prefecture, Japan, between September and December 2020. Participants also completed the Rosenberg Self-Esteem Scale (RSES) and Beck Depression Inventory (BDI-II). RESULTS: Questionnaires were returned from 102 participants (response rate: 51%). After excluding two participants with incomplete questionnaires, data for 100 participants were analyzed (53 women, 47 men; mean age [standard deviation]: 39.86 [17.45] years). Exploratory factor analysis extracted eight items loading on three factors: internalization of stigma, societal incomprehension, and confidentiality. Cronbach's α for all items and each factor demonstrated acceptable internal consistency (α = 0.76-0.87). Test-retest reliability was confirmed using data from 21 participants who completed the scale twice (r = 0.72 to 0.90). ESSS total scores and subscale scores correlated with RSES and BDI-II scores (r = -0.30 to 0.55). The ESSS demonstrated substantial constructive validity. However, total scores did not significantly correlate with objective physician assessment of self-stigma. SIGNIFICANCE: The results showed that the eight-item ESSS has high reliability and validity. This scale could facilitate the examination of factors associated with self-stigma in PWE, which could inform the development of effective interventions for reducing stigma.