Zeliha Tulek

Factors associated with perceived stigma among patients with epilepsy in Turkey

PURPOSE Epilepsy is one of the most stigmatizing medical conditions. The purpose of this study was to examine the perception of stigma and factors associated with stigma. MATERIAL AND METHODS This descriptive cross-sectional study was carried out among patients attending an epilepsy outpatient clinic of a university hospital between February and October 2014. One hundred ninety-four patients who were over 18years of age, who were able to communicate, and who had a diagnosis of definite epilepsy constituted the study sample. Patients seizure-free for two years were excluded from the group. Three-item Jacobys Stigma Scale was used to determine level of stigma, and Social Support Scale, Generalized Self-efficacy Scale, Epilepsy Knowledge Scale, and Epilepsy Attitude Scale were used to examine factors associated with stigma. RESULTS In total, 66 (34%) out of 194 subjects reported feeling stigmatized, with almost half of them (n=31) feeling highly stigmatized. Education, income, age at onset, seizure frequency in previous year, social support, and knowledge and attitudes towards epilepsy were significant factors determining scores on the stigma scale. It was also determined that stigma was associated with seeking help from mystics, disclosure of the diagnosis, and self-efficacy. CONCLUSION This study confirms the findings of previous studies that have identified the importance of both clinical and nonclinical factors in understanding the stigma of epilepsy. Findings support the need for social support, knowledge, and awareness to decrease the stigma associated with epilepsy.

Attitudes towards epilepsy among a sample of Turkish patients with epilepsy.

OBJECTIVE The attitude of patients with epilepsy towards their disease is an important factor in disease management and quality of life. The aim of this study was to define the attitudes of patients with epilepsy towards their disease and the factors that affect their attitudes. PATIENTS AND METHOD This descriptive study was performed on patients admitted to an epilepsy outpatient clinic of a university hospital between May and September 2015. The sample consisted of 70 patients over 18years of age with a diagnosis of epilepsy and no health problem other than epilepsy. Patients with no seizure in the last two years were excluded. The Epilepsy Attitude Scale was used to evaluate attitudes of the patients towards epilepsy; the Epilepsy Knowledge Scale, Rotters Locus of Control Scale, Hospital Anxiety and Depression Scale (HADS), and the Quality of Life in Epilepsy-10 (QOLIE-10) were used to investigate the attitude-related factors. RESULTS Among the 70 participants, 43 were female, and the mean age was 31.4years. The educational level of the patients was lower (primary school) in 38.6% of the sample, and 18.6% were unemployed. Time since diagnosis was 15.1years, 75.7% of the participants had generalized type of seizures, and more than half had seizures more frequently than once a month. The mean score of the attitude scale was 59.7±6.62 (range: 14-70). The attitudes of the patients towards epilepsy were found to be related to their educational status, living alone, and the attitudes of their families. The attitude scores were also related to the level of knowledge on epilepsy, stigma, and depression. Furthermore, the attitude was found to be correlated with quality of life. CONCLUSION Patients with epilepsy had moderate-to-good attitude towards their disease. It was observed that the attitude was related to the knowledge, stigma, and depression rather than to demographic factors and the seizures, and furthermore, the attitude was found to be correlated with quality of life.

Relationships between knowledge, attitudes, stigma, anxiety and depression, and quality of life in epilepsy: A structural equation modeling

PURPOSE Epilepsy not only is a medical disorder characterized by seizures, but is also associated with stigma and a neurological disorder that affects quality of life. Insufficient knowledge and misconceptions about epilepsy that causes the development of negative attitudes towards patients with epilepsy increase the stigmatization and psychosocial problems and impact the quality of life. The aim of this study was to examine the relationship between epilepsy knowledge, attitude, stigma, anxiety and depression, and quality of life within the framework of structural equation modeling. METHOD This research was carried out between May 2015 and May 2016 at the Epilepsy Outpatient Clinic of Istanbul University Istanbul Faculty of Medicine. The Epilepsy Knowledge Scale, Epilepsy Attitude Scale, Stigma Scale, Hospital Anxiety and Depression Scale, and Quality of Life in Epilepsy Scale-10 (QOLIE-10) were used. To determine the relationship between the concepts, research hypotheses were created, and structural equation modeling was made. RESULTS Two hundred five patients were included in the study, 53.7% were women, and the mean age was 32.5. It was found that 72.2% had generalized seizures, and 46.3% had more than one seizure per month. According to our proposed model, knowledge had a moderate relationship with attitude (including stigma) (r = 0.50) that, in turn, had a strong relationship with mental health (r = -0.62) while a moderate relationship with quality of life (r = 0.45). Our findings revealed that proposed model accounted for 20% of the variance in quality of life and 39% of the variance in mental health (anxiety and depression). CONCLUSION Mental health and quality of life of patient with epilepsy are closely related to the knowledge, attitude, and perceived stigma of the patients. Therefore, educating/supporting patients can help increase the mental health and quality of life.

Validity and Reliability of the Turkish Version of the Monitoring My Multiple Sclerosis Scale

INTRODUCTION This research was conducted to adapt the Monitoring My Multiple Sclerosis (MMMS) scale, which is a scale used for self-evaluation by multiple sclerosis (MS) patients of their own health and quality of life, to Turkish and to determine the psychometric properties of the scale. METHODS The methodological research was conducted in the outpatient MS clinic of a university hospital between January and September 2013. The sample in this study consisted of 140 patients aged above 18 who had a diagnosis of definite MS. Patients who experienced attacks in the previous month or had any serious medical problems other than MS were not included in the group. The linguistic validity of MMMS was tested by a backward-forward translation method and an expert panel. Reliability analysis was performed using test-retest correlations, item-total correlations, and internal consistency analysis. Confirmatory factor analysis and concurrent validity were used to determine the construct validity. The Multiple Sclerosis Quality of Life-54 instrument was used to determine concurrent validity and the Expanded Disability Status Scale, Hospital Anxiety and Depression Scale, and Mini Mental State Examination were used for further determination of the construct validity. RESULTS We determined that the scale consisted of four factors with loadings ranging from 0.49 to 0.79. The correlation coefficients of the scale were determined to be between 0.47 and 0.76 for item-total score and between 0.60 and 0.81 for items and subscale scores. Cronbachs alpha coefficient was determined to be 0.94 for the entire scale and between 0.64 and 0.89 for the subscales. Test-retest correlations were significant. Correlations between MMMS and other scales were also found to be significant. CONCLUSION The Turkish MMMS provides adequate validity and reliability for assessing the impact of MS on quality of life and health status in patients.