Network analysis of the relationship between social support and quality of life in patients with epilepsy.

BACKGROUND: Identifying important types of social support for patients with epilepsy is valuable to construct an effective system for support in daily life. However, previous studies have been inconsistent in identifying the most important types of social support for better quality of life (QOL) due to the high correlations between the social support factors. The present study employed network visualization analysis to identify the relationships between QOL and types of social support. METHODS: Two hundred and eighty-three patients with epilepsy (age range: 18 to 75 years) completed questionnaires of the Medical Outcomes Study Social Support Survey (MOS-SSS) and the Quality of Life in Epilepsy Inventory-31-Problems in the epilepsy monitoring unit at Tohoku University. The MOS-SSS was established to measure the four types of social support including emotional/informational support, tangible support, affectionate support, and positive social interaction. Our network visualization analysis represented the entire structure of the interrelationships between the four functions of social support and QOL. In addition, the relative importance of each function of social support were estimated by the centrality indices using three commonly used centrality indices: strength, betweenness, and closeness. RESULTS: The visualized network showed that positive social interaction and emotional/informational support were directly associated with QOL, whereas tangible support and affectionate support were not. Positive social interaction had the highest value for all three centrality indices and affectionate support had the second highest. Therefore, positive social interaction had the strongest connection to the other functions of support. DISCUSSION: Our network analysis and centrality indices findings showed that positive social interaction is the most important within the network of four types of social support and QOL. The emotional informational function is also important for directly improving QOL but is less related to the other functions. The affectionate function might be an indicator of whether a patient has a foundational relationship that leads to other functions of support. CONCLUSION: These results showed the importance of increasing positive social interaction in the social environment of patients with epilepsy. Therefore, practitioners need to encourage patients with epilepsy to increase their positive social interactions such as doing something enjoyable with others or someone to associate for relaxation to ensure high QOL. Connections outside the epilepsy support are important, such as having fun regardless of epilepsy, rather than only providing emotional or tangible support for epilepsy.

Development and validation of the Japanese version of the Epilepsy Stigma Scale in adults with epilepsy.

BACKGROUND: Self-stigma is considered to have immensely negative influences on the living and psychological states in patients with epilepsy. Understanding the stigma experienced by patients with epilepsy is essential considering its negative impact on their treatment and quality of life (QOL). However, few sufficiently validated self-report instruments are available to evaluate self-stigma in patients with epilepsy. The Epilepsy Stigma Scale (ESS) is one of the most commonly used self-reported questionnaires available to evaluate self-stigma in patients with epilepsy. The present study translated the ESS into Japanese to validate the Japanese version of the ESS (ESS-J) in Japanese adults with epilepsy. METHODS: The study included 338 patients with epilepsy (166 men, aged 18-75 years) who underwent comprehensive assessment including long-term video-electroencephalography monitoring, neuroimaging studies, and neuropsychological and psychosocial assessments in the Tohoku University Hospital Epilepsy Monitoring Unit. This study consisted of two phases: (1) translation of the ESS into Japanese using the back-translation technique; and (2) statistical analysis of the ESS-J to evaluate the factor structure, reliability, and validity. RESULTS: The 2-factor model achieved acceptable fit to the data: χ2 = 161.27, df = 34, p < 0.01, comparative fit index = 0.929, root mean square error of approximation = 0.105, standardized root mean squared residual = 0.047, Akaike's information criterion = 203.27 and, Bayesian information criterion = 283.56. These two subscales were named enacted stigma and felt stigma based on the theoretical model of self-stigma. We found the ESS-J to have acceptable internal consistency as follows: enacted (7 items; α = 0.88) and felt stigma subscale (3 items; α = 0.82). The concurrent validity was confirmed by adequate correlation with other related instruments. Both enacted and felt stigma had positive and moderate correlations with depression as measured by the Neurological Disorders Depression Inventory for Epilepsy (r = 0.44, p < 0.01; r = 0.41, p < 0.01, respectively) and with anxiety as measured by the Generalized Anxiety Disorder -7 (r = 0.48, p < 0.01; r = 0.38, p < 0.01, respectively). CONCLUSION: The ESS-J demonstrated acceptable validity and reliability. The present study provided preliminary evidence about the psychometric properties of the ESS-J, indicating the reliable factorial structure, adequate internal consistency, and satisfactory construct and concurrent validity. Measurement of the two types of self-stigma may offer a useful tool for clinical interpretation of patients' psychological state throughout epilepsy care, and as one of the patient-reported outcomes in QOL research.

Acceptance of disability predicts quality of life in patients with epilepsy.

BACKGROUND: Acceptance of disability (AOD) is a key concept in rehabilitation psychology that enhances psychosocial adjustment of individuals with disability. However, the impact of AOD on well-being has never been examined for patients with epilepsy. The present study investigated whether AOD affects quality of life (QOL) in patients with epilepsy in the presence of other multiple aspects of epilepsy based on the biopsychosocial model. METHODS: We retrospectively reviewed 151 consecutive patients with epilepsy (77 men, aged 18-74 years) who underwent comprehensive assessment including long-term video-EEG monitoring, neuroimaging studies, and neuropsychological and psychosocial assessment in our epilepsy monitoring unit. Data were obtained from medical records and self-reported questionnaires. The outcome variable was QOL. Predictive variables included demographic characteristics, seizure-related variables (i.e., duration of epilepsy, seizure frequency, and number of antiepileptic drugs), psychological factors (i.e., AOD, depression, and self-stigma), and social factors (i.e., social support and education level). Acceptance of disability was measured by the Adaptation of Disability Scale-Revised (ADS-R), which we translated into Japanese with the original author's approval, and examined its internal consistency reliability. Data were analyzed using four hierarchical multiple regression analysis models. RESULTS: The mean ADS-R score was 80 (range 45-115). The predictors accounted for 42% of the variance in QOL (R2 = 0.45, ΔR2 = 0.42, F[8, 141] = 14.47, p = 0.00). Higher AOD (p < 0.01), higher social support (p < 0.01), and lower depression scores (p = 0.02) were found to contribute significantly to higher overall QOL. CONCLUSION: The present study revealed AOD as an important psychological concept, in addition to social support and depression as previously reported, to improve the QOL of patients with epilepsy. Acceptance of disability should be incorporated in the intervention to increase QOL of patients with epilepsy.