Validity and reliability of global ratings of satisfaction with epilepsy surgery.

OBJECTIVE: 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.

Predicting postoperative epilepsy surgery satisfaction in adults using the 19-item Epilepsy Surgery Satisfaction Questionnaire and machine learning.

OBJECTIVE: 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 R2 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 R2 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.

Development and validation of the Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19).

OBJECTIVE: 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.

Mind the gap: Exploring information gaps for the development of an online resource hub for epilepsy and depression.

PURPOSE: Depression is common in epilepsy, and is often under-detected and under-treated. The motivation to create a depression eHub for persons with epilepsy is to connect them to the best available online resources to effectively manage their depression. The study sought to: 1) identify facilitators and barriers to accessing resources related to management of epilepsy and/or depression and 2) discuss gaps in available resources (free and in the public domain) and 3) identify suggestions for future content. METHODS: Semi-structured interviews were conducted with ten patients with epilepsy and a history of depression. Using inductive analysis, two team members engaged in a process of textual open-coding utilizing a conventional content analysis approach whereby content was conceptually clustered based on the research questions. A phenomenological framework was applied to describe the phenomenon of online health resource access and utilization from the perspective of people with epilepsy. RESULTS: Facilitators to the use of online resources included information credibility, thoughtful organization, and accessibility of resources. Barriers included difficulties finding and piecing together information from many different sites. Patients reported difficulty having the motivation to seek out resources while depressed, which was compounded by feelings of stigma, social isolation, and lack of control. Gaps in resources included a lack of information about living with epilepsy day-to-day and resources for family and friends. Suggested content included information to raise awareness about epilepsy and depression; questionnaires to screen for symptoms of depression; stories of other patients with epilepsy and depression via video or moderated forums; current research and news; local community resources; and tools and strategies to manage depression in epilepsy. CONCLUSIONS: There is a gap in accessible resources for patients with epilepsy and depression as well as barriers that include epilepsy-related restrictions, depression-related impairments, lack of awareness, and stigmatization. These results should be used to guide the development of e-Health resources for patients with epilepsy.

Social anxiety and its psychosocial impact on the lives of people with epilepsy.

Little is known about social anxiety among people with epilepsy (PWE), although PWE are more likely to be diagnosed with social anxiety disorder than the general population. The purpose of this study was to determine which psychosocial and seizure-related variables are associated with social anxiety. It was hypothesized that social anxiety would be positively correlated with perceived seizure severity, stigma, impact of epilepsy, fear of negative evaluation, and experiential avoidance. Further, social anxiety would be negatively correlated with epilepsy knowledge and disclosure of epilepsy. Finally, if a seizure occurred in public and others were unaware of the epilepsy, participants would report greater judgment, anxiety, and rumination compared with those in a situation where others were aware of the epilepsy. A total of 101 individuals with epilepsy participated in this online study. Social anxiety was found to correlate with both psychosocial and seizure-related variables in the expected directions. Further, social anxiety predicted significant variance in stigma and disclosure beyond known predictors of stigma. Participants in both conditions (disclosed diagnosis of epilepsy versus undisclosed diagnosis of epilepsy) were equally distressed by having a seizure in public. These findings provide an initial basis for discerning how to best assess and support PWE with social anxiety.

Patterns and frequency of the treatment of depression in persons with epilepsy.

OBJECTIVE: Though depression is common in persons with epilepsy, it often remains undiagnosed and/or untreated. The current study aimed to determine the proportion of persons with epilepsy receiving depression-related treatment and to characterize the type of treatment received. METHODS: Persons with epilepsy (n=185) from the only epilepsy clinic in a city of 1.2 million people completed questionnaires and the gold-standard Structured Clinical Interview for DSM Disorders (SCID) to assess current and past depression. Treatment for depression (pharmacological and nonpharmacological) was ascertained through patient self-report and chart review. RESULTS: Of those with current depression (n=27), the majority (70.3%) were not on any depression-related treatment. In persons with current depression, nonpharmacological management was the most common treatment method, followed by treatment with psychotropic medications such as selective serotonin reuptake inhibitors. More individuals with a past history of depression but without a current episode (n=43) were treated (37.2%); it was more common for these individuals to be treated with pharmacological measures. After using an algorithm that adjusts the treated prevalence for those who are successfully treated, the adjusted proportion of depression treatment was 53.1%. CONCLUSIONS: The proportion of people treated for current depression in this cohort was very low. Future studies should investigate barriers to treatment and how depression treatment can be optimized for those with epilepsy.

Using a standardized assessment tool to measure patient experience on a seizure monitoring unit compared to a general neurology unit.

Seizure monitoring unit (SMU) research typically focuses on diagnostic utility and medical management of epilepsy. However, patient safety and satisfaction are also imperative to high-quality SMU care. This study uses a standardized tool to evaluate patient experience on a SMU compared to a general neurology unit (GNU). The 27-item Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey was telephone-administered post-discharge to a sample of patients from our SMU and GNU. Data from a 33-month period were reviewed, encompassing 217 SMU patient admissions and 317 GNU patient admissions. On average, SMU patients were 14.7 years younger and stayed in the hospital 4.2 days longer than GNU patients. SMU patients provided lower overall mental health ratings (p<.001), perceived nursing staff to be more responsive to the call button (p<.001), and assigned higher overall ratings to their stay (p<0.05). Lower education was associated with more favorable hospital ratings on both units (p<0.05).

Measuring patient satisfaction following epilepsy surgery.

PURPOSE: To systematically review primary research examining patient satisfaction with epilepsy surgery in order to obtain evidence-based estimates of this surgical outcome; to assess methods used to measure epilepsy surgery satisfaction, overall epilepsy surgery satisfaction ratings, and predictors of epilepsy surgery satisfaction. METHODS: Systematic review of published studies in English up to June 2009, focusing on patient satisfaction with all types of epilepsy surgery in patients of all ages. We excluded studies that focused on satisfaction with epilepsy treatment in general, on quality of life without specific exploration of patient satisfaction with surgery, and on satisfaction with the process of health care delivery, rather than with surgery and its outcomes. KEY FINDINGS: Eight studies met inclusion criteria. Satisfaction was assessed using one or more global questions. Four epilepsy surgery satisfaction question content patterns emerged: (1) satisfied or dissatisfied, (2) perceived success or failure, (3) overall positive or negative impact, and (4) willingness to repeat surgery or regretting surgery. Overall 71% were satisfied; 64% considered it a success; it had a positive effect for 78%; and 87% would repeat surgery. Seizure freedom was the most common predictor of epilepsy surgery satisfaction, whereas postoperative neurologic deficit predicted dissatisfaction. SIGNIFICANCE: Patient satisfaction with interventions is an important aspect of patient-centered care, but it has received little attention in epilepsy surgery. Future research is required to develop and validate epilepsy surgery satisfaction tools. We provide preliminary guiding principles for measuring satisfaction after epilepsy surgery.

Social outcomes after temporal or extratemporal epilepsy surgery: a systematic review.

PURPOSE: The objective of this study was to systematically review the literature to assess social outcomes after epilepsy surgery. METHODS: A systematic literature search was conducted as part of a larger project on the development of an appropriateness and necessity rating tool to identify patients with focal epilepsy that may benefit from an epilepsy surgery evaluation. Studies were included if they reported postsurgical data on social outcomes (employment, driving, social relationships, marriage, education, financial status, behavior, and social interactions) and had a follow-up period of at least 24 months. Our search strategy yielded 5,061 studies. Sixty-five of these studies addressed social outcomes, but only 19 met all eligibility criteria. KEY FINDINGS: In adults, a significant improvement in full-time employment postsurgery was documented. The ability to drive was significantly increased after surgery and was dependent on seizure freedom. Patients generally perceived improved relationships, independence, and overall lifestyle postsurgery. Marital status generally remained unchanged when compared to controls, education improved modestly, and income/financial status changes depended on how it was assessed (e.g., income level vs. receipt of disability pension). In children, a study examining behavior showed improved social interactions in those who underwent surgery compared to controls. The results for other social outcome categories were more variable. SIGNIFICANCE: Overall, the majority of studies reported improvement in social outcomes after surgery. However, prospective controlled observational studies using objective social outcome measures are necessary prior to making specific conclusions about the influence of surgery on social outcomes other than employment or driving status in all age groups, but particularly in children and the elderly.

Psychiatric outcomes of epilepsy surgery: a systematic review.

PURPOSE: The objective of this systematic review was to identify: (1) prevalence and severity of psychiatric conditions before and after resective epilepsy surgery, (2) incidence of postsurgical psychiatric conditions, and (3) predictors of psychiatric status after surgery. METHODS: A literature search was conducted using PubMed, EmBase, and the Cochrane database as part of a larger project on the development of an appropriateness and necessity rating tool to identify patients of all ages with potentially resectable focal epilepsy. The search yielded 5,061 articles related to epilepsy surgery and of the 763 articles meeting the inclusion criteria and reviewed in full text, 68 reported psychiatric outcomes. Thirteen articles met the final eligibility criteria. KEY FINDINGS: The studies demonstrated either improvements in psychiatric outcome postsurgery or no changes in psychiatric outcome. Only one study demonstrated deterioration in psychiatric status after surgery, with higher anxiety in the context of continued seizures post-surgery. One study reported a significantly increased rate of psychosis after surgery. The two main predictors of psychiatric outcome were seizure freedom and presurgical psychiatric history. De novo psychiatric conditions occurred postsurgery at a rate of 1.1-18.2%, with milder psychiatric issues (e.g., adjustment disorder) being more common than more severe psychiatric issues (e.g., psychosis). SIGNIFICANCE: Overall, studies demonstrated either improvement in psychiatric outcomes postsurgery or no change. However, there is a need for more prospective, well-controlled studies to better delineate the prevalence and severity of psychiatric conditions occurring in the context of epilepsy surgery, and to identify specific predictors of psychiatric outcomes after epilepsy surgery.

Online tools for individuals with depression and neurologic conditions: A scoping review.

BACKGROUND: Patients with neurologic conditions commonly have depression. Online tools have the potential to improve outcomes in these patients in an efficient and accessible manner. We aimed to identify evidence-informed online tools for patients with comorbid neurologic conditions and depression. METHODS: A scoping review of online tools (free, publicly available, and not requiring a facilitator) for patients with depression and epilepsy, Parkinson disease (PD), multiple sclerosis (MS), traumatic brain injury (TBI), or migraine was conducted. MEDLINE, EMBASE, PsycINFO, Cochrane Database of Systematic Reviews, and Cochrane CENTRAL Register of Controlled Trials were searched from database inception to January 2017 for all 5 neurologic conditions. Gray literature using Google and Google Scholar as well as app stores for both Android and Apple devices were searched. Self-management or self-efficacy online tools were not included unless they were specifically targeted at depression and one of the neurologic conditions and met the other eligibility criteria. RESULTS: Only 4 online tools were identified. Of these 4 tools, 2 were web-based self-management programs for patients with migraine or MS and depression. The other 2 were mobile apps for patients with PD or TBI and depression. No online tools were found for epilepsy. CONCLUSIONS: There are limited depression tools for people with neurologic conditions that are evidence-informed, publicly available, and free. Future research should focus on the development of high-quality, evidence-based online tools targeted at neurologic patients.

Development of an online tool to determine appropriateness for an epilepsy surgery evaluation.

OBJECTIVES: Despite evidence that epilepsy surgery is more effective than medical therapy, significant delays between seizure intractability and surgery exist. We aimed to develop a new Web-based methodology to assist physicians in identifying patients who might benefit from an epilepsy surgery evaluation. METHODS: The RAND/UCLA appropriateness method was used. Clinical scenarios were developed based on eligibility criteria from previously published surgical series. Thirteen national experts rated the scenarios for their appropriateness for an epilepsy surgery evaluation based on published evidence. All scenarios were rerated after a face-to-face meeting following a modified Delphi process. Appropriate scenarios were rerated for necessity to determine referral priority. RESULTS: Of the final 2646 scenarios, 20.6% (n = 544) were appropriate, 17.2% (n = 456) uncertain, and 61.5% (n = 1626) inappropriate for a surgical evaluation. Of the appropriate cases, 55.9% (n = 306) were rated as very high priority. Not attempting AED treatment was always rated as inappropriate for a referral. Trial of 2 AEDs was usually rated as appropriate unless seizure-free or not fully investigated Based on these data, a Web-based decision tool (www.epilepsycases.com) was created. CONCLUSIONS: Using the available evidence through 2008 and expert consensus, we developed a Web-based decision tool that provides a guide for determining candidacy for epilepsy surgery evaluations. The tool needs clinical validation, and will be updated and revised regularly. This rendition of the tool is most appropriate for those over age 12 years with focal epilepsy. The Rand/UCLA appropriate methodology might be considered in the development of guidelines in other areas of epilepsy care.