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  • 1
    In: Epilepsy Currents, SAGE Publications
    Abstract: With more than 6000 attendees between in-person and virtual offerings, the American Epilepsy Society Meeting 2022 in Nashville, felt as busy as in prepandemic times. An ever-growing number of physicians, scientists, and allied health professionals gathered to learn a variety of topics about epilepsy. The program was carefully tailored to meet the needs of professionals with different interests and career stages. This article summarizes the different symposia presented at the meeting. Basic science lectures addressed the primary elements of seizure generation and pathophysiology of epilepsy in different disease states. Scientists congregated to learn about anti-seizure medications, mechanisms of action, and new tools to treat epilepsy including surgery and neurostimulation. Some symposia were also dedicated to discuss epilepsy comorbidities and practical issues regarding epilepsy care. An increasing number of patient advocates discussing their stories were intertwined within scientific activities. Many smaller group sessions targeted more specific topics to encourage member participation, including Special Interest Groups, Investigator, and Skills Workshops. Special lectures included the renown Hoyer and Lombroso, an ILAE/IBE joint session, a spotlight on the impact of Dobbs v. Jackson on reproductive health in epilepsy, and a joint session with the NAEC on coding and reimbursement policies. The hot topics symposium was focused on traumatic brain injury and post-traumatic epilepsy. A balanced collaboration with the industry allowed presentations of the latest pharmaceutical and engineering advances in satellite symposia.
    Type of Medium: Online Resource
    ISSN: 1535-7597 , 1535-7511
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 2135352-9
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  • 2
    In: Epilepsy & Behavior, Elsevier BV, Vol. 84 ( 2018-07), p. 49-55
    Type of Medium: Online Resource
    ISSN: 1525-5050
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2018
    detail.hit.zdb_id: 2018844-4
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  • 3
    In: Epilepsy & Behavior, Elsevier BV, Vol. 113 ( 2020-12), p. 107599-
    Type of Medium: Online Resource
    ISSN: 1525-5050
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2020
    detail.hit.zdb_id: 2018844-4
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  • 4
    In: Epilepsia, Wiley, Vol. 62, No. 9 ( 2021-09), p. 2094-2102
    Abstract: Patient‐reported outcome measures (PROMs) are used widely to elicit patient's self‐appraisal of their health status and quality of life. One fundamental assumption when measuring PROMs is that all individuals interpret questions about their health status in a consistent manner. However, subgroups of patients with a similar health condition may respond differently to PROM questions (ie, differential item functioning [DIF]), leading to biased estimates of group differences on PROM scores. Understanding these differences can help inform the clinical interpretation of PROMs. This study examined whether DIF affects 10‐item Quality of Life in Epilepsy (QOLIE10) scores reported by patients with epilepsy in outpatient clinics. Methods Data were from the Calgary Comprehensive Epilepsy Program, a prospective registry of patients with epilepsy in Calgary, Alberta. Latent variable mixture models (LVMMs) based on standard two‐parameter graded response models with increasing numbers of latent classes were applied to QOLIE10 item data. Model fit was assessed using the Bayesian Information Criterion (BIC) and latent class model entropy. Ordinal logistic regression was used to identify QOLIE10 items that exhibited DIF. Results In this cohort of 1143 patients, 567 (49.6%) were female and the median age was 37.0 (interquartile range [IQR] 27.0) years. A two‐class LVMM, which provided the best fit to the data, identified two subgroups of patients with different response patterns to QOLIE10 items, with class proportions of 0.62 and 0.38. The two subgroups differed with respect to antiseizure polytherapy, reported medication side effects, frequency of seizures, and psychiatric comorbidities. QOLIE10 items on the physical and psychological side effects of medication exhibited large DIF effects. Significance Our study revealed two different response patterns to quality‐of‐life instruments, suggesting heterogeneity in how patients interpret some of the questions. Researchers and users of PROMs in epilepsy need to consider the differential interpretation of items for various instruments to ensure valid understanding and comparisons of PROM scores.
    Type of Medium: Online Resource
    ISSN: 0013-9580 , 1528-1167
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2002194-X
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  • 5
    In: Epilepsia, Wiley, Vol. 61, No. 12 ( 2020-12), p. 2729-2738
    Abstract: No validated tools exist to assess satisfaction with epilepsy surgery. We aimed to develop and validate a new measure of patient satisfaction with epilepsy surgery, the 19‐item Epilepsy Surgery Satisfaction Questionnaire (ESSQ‐19). Methods An initial 31‐item measure was developed based on literature review, patient focus groups, thematic analysis, and Delphi panels. The questionnaire was administered twice, 4‐6 weeks apart, to 229 adults (≥18 years old) who underwent epilepsy surgery ≥1 year earlier, at three centers in Canada and one in Sweden. Participants also completed seven validated questionnaires to assess construct validity. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) assessed the factorial structure of the questionnaire. Cronbach alpha and intraclass correlation coefficients (ICCs) assessed the internal consistency and test‐retest reliability of the ESSQ‐19. Spearman and polyserial correlations assessed construct validity. Results Median age of participants and time since surgery were 42 years (interquartile range [IQR] = 32‐54) and 5 years (IQR = 2‐8.75), respectively. EFA and CFA yielded 18 items that segregated into four domains (mean score [SD] ), namely, seizure control (76.4 [25]), psychosocial functioning (67.3 [26] ), surgical complications (84 [22]), and recovery from surgery (73 [24] ), one global satisfaction item, and a summary global score (74 [21]). The domain and summary scores demonstrated good to excellent internal reliability (Cronbach ⍺ range = .84‐.95) and test‐retest reliability (ICC range = 0.71‐0.85). Construct validity was supported by predicted correlations with other instruments. Significance The ESSQ‐19 is a new, valid, and reliable measure of patient satisfaction with epilepsy surgery that can be used in clinical and research settings.
    Type of Medium: Online Resource
    ISSN: 0013-9580 , 1528-1167
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2020
    detail.hit.zdb_id: 2002194-X
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  • 6
    In: Epilepsia, Wiley, Vol. 63, No. 4 ( 2022-04), p. 777-788
    Abstract: We aimed to assess the reliability and validity of single‐item global ratings (GR) of satisfaction with epilepsy surgery. Methods We recruited 240 patients from four centers in Canada and Sweden who underwent epilepsy surgery ≥1 year earlier. Participants completed a validated questionnaire on satisfaction with epilepsy surgery (the ESSQ‐19), plus a single‐item GR of satisfaction with epilepsy surgery twice, 4–6 weeks apart. They also completed validated questionnaires on quality of life, depression, health state utilities, epilepsy severity and disability, medical treatment satisfaction and social desirability. Test‐retest reliability of the GR was assessed with the intra‐class correlation coefficient (ICC). Construct and criterion validity were examined with polyserial correlations between the GR measure of satisfaction and validated questionnaires and with the ESSQ‐19 summary score. Non‐parametric rank tests evaluated levels of satisfaction, and ROC analysis assessed the ability of GRs to distinguish among clinically different patient groups. Results Median age and time since surgery were 42 years (IQR 32–54) and 5 years (IQR 2–8), respectively. The GR demonstrated good to excellent test‐retest reliability (ICC = 0.76; 95% CI 0.67–0.84) and criterion validity (0.85; 95% CI 0.81–0.89), and moderate correlations in the expected direction with instruments assessing quality of life (0.59; 95% CI 0.51–0.63), health utilities (0.55; 95% CI 0.45–0.65), disability (−0.51; 95% CI −0.41, −0.61), depression (−0.48; 95% CI −0.38, −0.58), and epilepsy severity (−0.48; 95% CI −0.38, −0.58). As expected, correlations were lower for social desirability (0.40; 95% CI 0.28–0.52) and medical treatment satisfaction (0.33; 95% CI 0.21–0.45). The GR distinguished participants who were seizure‐free (AUC 0.75; 95% CI 0.67–0.82), depressed (AUC 0.75; 95% CI 0.67–0.83), and self‐rated as having more severe epilepsy (AUC 0.78; 95% CI 0.71–0.85) and being more disabled (AUC 0.82; 95% CI 0.74–0.90). Significance The GR of epilepsy surgery satisfaction showed good measurement properties, distinguished among clinically different patient groups, and appears well‐suited for use in clinical practice and research.
    Type of Medium: Online Resource
    ISSN: 0013-9580 , 1528-1167
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2002194-X
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  • 7
    In: Epileptic Disorders, Wiley, Vol. 20, No. 5 ( 2018-10), p. 364-373
    Abstract: Aims . Patient satisfaction with therapeutic interventions is an important outcome of care. Although generic measures of patient satisfaction exist, there is no validated scale for measuring patient satisfaction with epilepsy surgery. We aimed to systematically obtain patient‐identified factors related to satisfaction with epilepsy surgery as a means of informing clinicians about the ways that patients evaluate outcomes of their treatment and as a conceptual basis for the future development of epilepsy surgery patient satisfaction scales. Methods . Focus group discussions with epilepsy surgery patients ( n =9) were conducted to identify themes relevant to patient satisfaction with epilepsy surgery and to draft initial items of importance. Consensus methodology (Delphi technique) was used to obtain expert opinion ( n =13) to refine the items. Member‐checking with focus group participants was performed to ensure the identified items were relevant, clear, and inclusive. Results . A list of 31 items embodied 12 themes related to patient‐reported satisfaction with epilepsy surgery. These included adverse effects, medical care or rehabilitation, seizure control, post‐operative recovery, anti‐seizure medication, independence, seizure worry, ability to drive, social relationships, self‐confidence, improved cognitive function, and improved physical health. Conclusions . This study used a systematic approach to identify factors that are important to patients when assessing satisfaction with epilepsy surgery. This knowledge can assist clinicians caring for these patients and is also a critical step towards the validation of a formal scale to assess satisfaction with epilepsy surgery.
    Type of Medium: Online Resource
    ISSN: 1294-9361 , 1950-6945
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2018
    detail.hit.zdb_id: 2118181-0
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  • 8
    In: Dementia, SAGE Publications, Vol. 20, No. 6 ( 2021-08), p. 2007-2023
    Abstract: The COVID-19 pandemic has necessitated public health measures that have impacted the provision of care for people living with dementia and their families. Additionally, the isolation that results from social distancing may be harming well-being for families as formal and informal supports become less accessible. For those living with dementia and experiencing agitation, social distancing may be even harder to maintain, or social distancing could potentially aggravate dementia-related neuropsychiatric symptoms. To understand the lived experience of social and physical distancing during the COVID-19 pandemic in Canada, we remotely interviewed 21 participants who normally attend a dementia specialty clinic in Calgary, Alberta, during a period where essential businesses were closed and health care had abruptly transitioned to telemedicine. A reflexive thematic analysis was used to analyze the interview and field note data. The impacts of the public health measures in response to the pandemic emerged through iterative analysis in three main categories of experience: (1) personal, (2) health services, and (3) health status (of both persons living with dementia and care partner). Isolation and mental health needs emerged as important impacts to family experiences. This in-depth understanding of the needs and experiences of the pandemic for people living with dementia suggests that innovative means are urgently needed to facilitate provision of remote medicine and also social interaction and integration.
    Type of Medium: Online Resource
    ISSN: 1471-3012 , 1741-2684
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2021
    detail.hit.zdb_id: 2084045-7
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  • 9
    In: Epilepsia, Wiley, Vol. 63, No. 2 ( 2022-02), p. 440-450
    Abstract: The relationship between antiseizure medications (ASMs), which improve health outcomes by controlling seizures, and health‐related quality of life (HRQOL) is poorly understood and may involve intermediate variables. We evaluated the potential mediators of the association between ASMs and HRQOL. Methods Data are from an outpatient registry of adult patients with epilepsy seen at the Foothills Medical Center, Calgary, Alberta, Canada. Quality of life was measured using the 10‐item Quality of Life in Epilepsy, and depression was measured using the Neurological Disorders Depression Inventory for Epilepsy. Propensity score matching was used to adjust for covariate imbalance between patients who received a single ASM (monotherapy) and those who received two or more ASMs (polytherapy) due to confounding. Mediation analysis was used to estimate the mediating effects of depression and ASM side effects on the association between patients' ASM polytherapy and HRQOL. Results Of 778 patients included in this analysis, 274 (35.2%) were on two or more ASMs. Patient‐reported depression and ASM side effects jointly mediated the association between ASMs and HRQOL; these mediators accounted for 42% of the total average effect of ASM polytherapy ( = −13.6, 95% confidence interval = −18.2 to −8.6) on HRQOL. Significance These findings highlight the importance of managing depression and ASM side effects for improving health outcomes of patients requiring treatment with ASMs. Intervention programs aimed at improving HRQOL of patients with epilepsy need to target these potential mediators.
    Type of Medium: Online Resource
    ISSN: 0013-9580 , 1528-1167
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2002194-X
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  • 10
    In: Epilepsia, Wiley, Vol. 62, No. 9 ( 2021-09), p. 2103-2112
    Abstract: The 19‐item Epilepsy Surgery Satisfaction Questionnaire (ESSQ‐19) is a validated and reliable post hoc means of assessing patient satisfaction with epilepsy surgery. Prediction models building on these data can be used to counsel patients. Methods The ESSQ‐19 was derived and validated on 229 patients recruited from Canada and Sweden. We isolated 201 (88%) patients with complete clinical data for this analysis. These patients were adults (≥18 years old) who underwent epilepsy surgery 1 year or more prior to answering the questionnaire. We extracted each patient’s ESSQ‐19 score (scale is 0–100; 100 represents complete satisfaction) and relevant clinical variables that were standardized prior to the analysis. We used machine learning (linear kernel support vector regression [SVR]) to predict satisfaction and assessed performance using the R 2 calculated following threefold cross‐validation. Model parameters were ranked to infer the importance of each clinical variable to overall satisfaction with epilepsy surgery. Results Median age was 41 years (interquartile range [IQR] = 32–53), and 116 (57%) were female. Median ESSQ‐19 global score was 68 (IQR = 59–75), and median time from surgery was 5.4 years (IQR = 2.0–8.9). Linear kernel SVR performed well following threefold cross‐validation, with an R 2 of .44 (95% confidence interval = .36–.52). Increasing satisfaction was associated with postoperative self‐perceived quality of life, seizure freedom, and reductions in antiseizure medications. Self‐perceived epilepsy disability, age, and increasing frequency of seizures that impair awareness were associated with reduced satisfaction. Significance Machine learning applied postoperatively to the ESSQ‐19 can be used to predict surgical satisfaction. This algorithm, once externally validated, can be used in clinical settings by fixing immutable clinical characteristics and adjusting hypothesized postoperative variables, to counsel patients at an individual level on how satisfied they will be with differing surgical outcomes.
    Type of Medium: Online Resource
    ISSN: 0013-9580 , 1528-1167
    URL: Issue
    RVK:
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 2002194-X
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