The cost-effectiveness and benefit of many diagnostic tests used in the presurgical evaluation for persons with epilepsy is for the most part uncertain as is their influence on decision-making. The options we have at our disposal are ever increasing. Advanced imaging modalities aim to improve surgical candidacy by helping us better define the epileptogenic zone and optimize surgical planning. However, judicious use is important. Randomized controlled trials delineating which mode of investigation is superior are lacking. Presurgical tests do have incremental value by increasing surgical candidacy and refining surgical planning. The yield of additional imaging will increase with complex localization. However, every case must be tailored by hypothesis, cost, and accessibility. Future studies using a quantitative cost-benefit framework are needed to determine the cost-effectiveness of advanced diagnostic tests (beyond magnetic resonance imaging) in the presurgical evaluation of those with epilepsy.

PURPOSE: Adults with high-grade glioma (HGG), WHO grade III or IV, have substantial palliative care needs. Our aim was to determine occurrence, timing, and factors associated with palliative care consultation (PCC) in HGG at one large academic institution. METHODS: HGG patients receiving care between 08/1/2011 and 01/23/2020 were identified retrospectively from a multi-center healthcare system cancer registry. Patients were stratified by any PCC (yes/no), and timing of initial PCC by disease phase: diagnosis (before radiation), during initial treatment (first-line chemotherapy/radiation), second-line treatment(s), or end-of-life (after last chemotherapy). RESULTS: Of 621 HGG patients, 134 (21.58%) received PCC with the vast majority occurring during hospital admission [111 (82.84%)]. Of the 134, 14 (10.45%) were referred during the diagnostic phase; 35 (26.12%) during initial treatment; 20 (14.93%) during second-line treatment; and 65 (48.51%) during end of life. In multivariable logistic regression, only higher Charlson Comorbidity Index was associated with greater odds of PCC [OR 1.3 (95% CI 1.2-1.4), p < 0.01]; but not age or histopathology. Patients who received PCC prior to end of life had longer survival from diagnosis than those referred during end of life [16.5 (8, 24) months vs. 11 (4, 17); p < 0.01]. CONCLUSION: A minority of HGG patients ever received PCC, which primarily occurred in the inpatient setting, and nearly half during the end-of-life phase. Thus, only about one in ten patients in the entire cohort potentially received the benefits of earlier PCC despite earlier referral having an association with longer survival. Further studies should elucidate barriers and facilitators to early PCC in HGG.

The increased focus on stakeholder engagement in determining the aims, design, conduct of research and dissemination of results is substantially changing the biomedical research paradigm. In this era of patient-centered care, incorporating participatory action research methodology into large-scale multi-center studies is essential. The adoption of community engagement facilitates meaningful contribution to the design and implementation of clinical studies. Consequently, encouraging citizen participation and involving key organizations may guide the effective development of future clinical research protocols. Here, we discuss our experience in engaging individuals, their caregivers, as well as scientific and consumer organizations in public outreach and knowledge transfer to assist in the development of effective strategies for recruitment and retention in a future post-traumatic epilepsy prevention randomized controlled trial within the National Institute of Neurologic Disorders and Stroke Center Without Walls, Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx). The study includes a Public Engagement Core with a diverse consortium of stakeholder partners. Based on the Core's ongoing experience, it is recommended that multicenter studies integrate a participatory action research based approach to harness the benefits of a collective inquiry. The blueprint created by the EpiBioS4Rx Public Engagement Core is a resource that could be applied in other areas of biomedical research.

Background

Guidelines recommend that surgery be considered in patients with drug-resistant epilepsy, yet delays to epilepsy surgery still exist. A Web-based, evidence-informed clinical decision tool (www.toolsforepilepsy.com) was developed to help physicians determine which patients are appropriate for an epilepsy surgery evaluation. We evaluated the usability and feasibility of the tool with the intended end users in order to improve implementation into practice.

Methods

Usability testing was conducted with relevant end users. After the tool was modified based on usability results, another group of end users trialed the tool in their clinical practice. This latter group of end users then participated in focus groups and semi-structured interviews to address barriers and facilitators to tool implementation. Finally, a stakeholder meeting was held with domain experts and end users to discuss further changes to the tool and implementation strategies.

Results

Six overall themes were identified through usability testing, and an additional 11 themes were identified through the focus groups and interviews. The tool was modified based on these findings, which were then presented at the stakeholder meeting of experts and end users for further refinement. The findings were also used to guide discussions of potential implementation strategies at the meeting.

Conclusion

This study provides guidance on how to improve the usability of clinical decision tools by engaging end users, experts, and other key stakeholders. The modifications to the tool should facilitate its implementation in clinical practice and ultimately enhance the quality of care persons with epilepsy receive.

There is common agreement that many disorders of the central nervous system are 'complex', that is, there are many potential factors that influence the development of the disease, underlying mechanisms, and successful treatment. Most of these disorders, unfortunately, have no cure at the present time, and therapeutic strategies often have debilitating side effects. Interestingly, some of the 'complexities' of one disorder are found in another, and the similarities are often network defects. It seems likely that more discussions of these commonalities could advance our understanding and, therefore, have clinical implications or translational impact. With this in mind, the Fourth International Halifax Epilepsy Conference and Retreat was held as described in the prior paper, and this companion paper focuses on the second half of the meeting. Leaders in various subspecialties of epilepsy research were asked to address aging and dementia or psychosis in people with epilepsy (PWE). Commonalities between autism, depression, aging and dementia, psychosis, and epilepsy were the focus of the presentations and discussion. In the last session, additional experts commented on new conceptualization of translational epilepsy research efforts. Here, the presentations are reviewed, and salient points are highlighted.

In Canada, recreational use of cannabis was legalized in October 2018. This policy change along with recent publications evaluating the efficacy of cannabis for the medical treatment of epilepsy and media awareness about its use have increased the public interest about this agent. The Canadian League Against Epilepsy Medical Therapeutics Committee, along with a multidisciplinary group of experts and Canadian Epilepsy Alliance representatives, has developed a position statement about the use of medical cannabis for epilepsy. This article addresses the current Canadian legal framework, recent publications about its efficacy and safety profile, and our understanding of the clinical issues that should be considered when contemplating cannabis use for medical purposes.

BACKGROUND AND OBJECTIVES: Mood, anxiety disorders, and suicidality are more frequent in people with epilepsy than in the general population. Yet, their prevalence and the types of mood and anxiety disorders associated with suicidality at the time of the epilepsy diagnosis are not established. We sought to answer these questions in patients with newly diagnosed focal epilepsy and to assess their association with suicidal ideation and attempts. METHODS: The data were derived from the Human Epilepsy Project study. A total of 347 consecutive adults aged 18-60 years with newly diagnosed focal epilepsy were enrolled within 4 months of starting treatment. The types of mood and anxiety disorders were identified with the Mini International Neuropsychiatric Interview, whereas suicidal ideation (lifetime, current, active, and passive) and suicidal attempts (lifetime and current) were established with the Columbia Suicidality Severity Rating Scale (CSSRS). Statistical analyses included the t test, χ2 statistics, and logistic regression analyses. RESULTS: A total of 151 (43.5%) patients had a psychiatric diagnosis; 134 (38.6%) met the criteria for a mood and/or anxiety disorder, and 75 (21.6%) reported suicidal ideation with or without attempts. Mood (23.6%) and anxiety (27.4%) disorders had comparable prevalence rates, whereas both disorders occurred together in 43 patients (12.4%). Major depressive disorders (MDDs) had a slightly higher prevalence than bipolar disorders (BPDs) (9.5% vs 6.9%, respectively). Explanatory variables of suicidality included MDD, BPD, panic disorders, and agoraphobia, with BPD and panic disorders being the strongest variables, particularly for active suicidal ideation and suicidal attempts. DISCUSSION: In patients with newly diagnosed focal epilepsy, the prevalence of mood, anxiety disorders, and suicidality is higher than in the general population and comparable to those of patients with established epilepsy. Their recognition at the time of the initial epilepsy evaluation is of the essence.