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Purpose: As comorbidities can affect treatment decisions, quality of life, and prognosis in epilepsy, it is important that they are detected and addressed as soon as possible. Screening tools can help by rapidly assessing various additional challenges in epilepsy., Methods: To map the use and perceived benefit of different screening instruments for quality of life, psychiatric comorbidity, and cognition, along with side effects from anti-seizure medication in Europe, we sent an online questionnaire to dedicated epilepsy centres departments within the European Reference Network for Rare and Complex Epilepsies (EpiCARE)., Results: Among the 40 hospitals in the EpiCARE network, we received responses from 25 (63%), with 28 individual respondents. Most respondents reported using screening for quality of life (86%) and psychiatric comorbidity (82%), but relatively few (14%) screen for sexual problems. Many (47) different tools were used for evaluation of cognitive dysfunction, but just a few (5) different tools were used to screen for adverse events. The optimization of individual patient care was one main reason given for using screening tools (58%-100% - depending on purpose of tool), another was research (50% - 88% - depending on purpose of tool). A major benefit of using screening tools perceived by the respondents is the detection of "hidden" comorbidity (67% - 90% - depending on purpose of tool)., Conclusion: In the absence of a broad consensus regarding use of screening tools, practices vary considerably among epilepsy centres. Greater emphasis should be directed towards harmonizing use of screening tools. Future research should address how screening results influence treatment choices, and how these might affect clinical care., Competing Interests: Declaration of Competing Interests O.H. reports personal fees from Roche, Eisai, UCB, Novartis, and LivaNova, outside the submitted work. M.I.L. reports personal fees from Eisai, UCB, and Arvelle, outside the submitted work. C.J.L. reports personal fees from Eisai, GW/Jazz, Angelini and UCB Pharma, outside the submitted work. C.H. reports personal fees from UCB, Eisai, Precisis, GW Pharma. A.H.S. reports personal fees from Eisai outside the submitted work. K.Å.A. reports no disclosures., (Copyright © 2022. Published by Elsevier Ltd.)

Objectives: Those affected with epilepsy have long been subject to stigmatization. This may have manifold negative effects, for example social isolation, low self-esteem, reduced quality of life and worsening of seizures. In Norway educational programs have been arranged at the National Centre for Epilepsy, aiming at reducing stigma and shame associated with epilepsy, and thereby increase the quality of life for those affected and their families. Thus, we wanted to explore the extent of self-reported perceived stigma and experienced discrimination in a Norwegian cohort with epilepsy., Materials and Methods: We conducted a web-based questionnaire survey in Norway. Participants were asked to provide background and epilepsy-related information. In addition, they were encouraged to answer questions regarding felt stigmatization in different situations and to rate stigma according to the Jacoby stigma scale., Results: Of 1182 respondents, 56% reported to have felt being stigmatized, and 35% reported to have experienced discrimination solely on the ground of the disease. 70% of respondents reported at least one type of perceived or experienced stigma. After controlling for gender, age, perceived depression and seizure freedom, reports of experienced stigmatization was a statistically significant independent predictor for reduced quality of life., Conclusions: A considerable proportion of people with epilepsy in Norway feel stigmatized and/or subject to discrimination, which negatively affects their quality of life., (© 2021 The Authors. Acta Neurologica Scandinavica published by John Wiley & Sons Ltd.)

Purpose: Most studies of quality of life (QOL) in seizure-free epilepsy patients suggest normal or near-normal function. Previous studies on QOL in well-controlled epilepsy have not investigated determinants for QOL from a database that includes a wide range of health related and epilepsy related variables, as well as demographical data, neuropsychological data, data from a comprehensive personality inventory and results from a QOL-questionnaire. Thus, the aim of this study was to analyze predictors of QOL based on such a range of variables., Methods: Adults with epilepsy on antiepileptic (AED) monotherapy and without epileptic seizures for at least 2 years (n=158) were assessed with the QOLIE-89., Results: The main findings were that QOL in well-controlled epilepsy patients was in the normal range and that presence of substantial health related concerns was a significant predictor of poor QOL., Discussion: The findings that substantial health concerns predict poor QOL may have clinical implications, as seizure-free epilepsy is a relatively benign condition, and careful information and counselling about this may alleviate health concerns and improve quality of life.

Purpose: To develop a Norwegian version of the Quality of Life in Epilepsy Inventory (QOLIE-89) and to confirm its psychometric properties., Methods: The QOLIE-89 was adapted to Norwegian language through a translation-backtranslation procedure. The assessment included 397 patients with epilepsy. We assessed internal consistency and test-retest reliabilities. Construct validity was assessed by correlating scales with items of the 15D health status questionnaire, and discriminant validity was assessed by comparing scores for known groups., Results: The internal consistency reliability (Cronbach's alpha, 0.76-0.92) and test-retest reliability (intraclass correlation coefficient, 0.67-0.96) for the individual domains were acceptable. Spearman's rank correlations between QOLIE-89 domain scores and corresponding 15D single-item scores were high (p, 0.47-0.76), and generally higher than the associations between noncorresponding items. Most QOLIE-89 items discriminated well between patients according to seizure status, psychiatric comorbidity, and working status; less well after antiepileptic drug use and neurologic comorbidity., Conclusions: In this cross-sectional survey, the Norwegian version of the QOLIE-89 was reliable and showed properties supporting construct validity, at a level comparable with the original U.S. version.

The objective of this study was to compare the health-related quality of life (HRQL) of patients with epilepsy with populations suffering from different chronic diseases, using the short form 36 (SF-36) health profile measure. The populations to be compared were adult patients drawn from hospital based registers, with confirmed epilepsy (n = 397), angina pectoris (n = 785), rheumatoid arthritis (n = 1,030), asthma (n = 117) and chronic obstructive pulmonary disease (COPD) (n = 221). Health-related quality of life scores were compared using analysis of covariance (ANCOVA) for predicting mean scores adjusted for age, gender, education and comorbidity. Patients with epilepsy on average scored highest on all scales, reflecting that in our sample the majority had well-controlled epilepsy. Our results indicate that the HRQL of a representative sample of patients with epilepsy is good, when compared with other chronic disorders, although reduced in several dimensions compared with a general reference population. Patients with rheumatoid arthritis (RA) and COPD scored lowest on the physical function scales, while rheumatoid arthritis patients reported most pain.