John D. Hixson

The effects of epilepsy and its treatments on affect and emotion.

Epilepsy creates significant morbidity, disability, and loss of productivity worldwide. Although unpredictable seizures define epilepsy, the cognitive and emotional difficulties encountered by people with epilepsy may have an even greater impact on everyday function. Epilepsy is associated with lower quality of life (QOL); while this is partially attributable to ongoing seizures, QOL is independently affected by comorbid affective disorders like depression and anxiety. These can accompany all types of epilepsy, but may be especially noteworthy in partial epilepsy syndromes with foci in the frontal or temporal lobes. There is growing evidence that epileptogenic lesions disrupt cortical networks that carry out emotional processing. In addition to epilepsy itself, treatment strategies also affect cognitive functioning and mood. Antiepileptic drugs, vagal nerve stimulation, and surgical resection have all been associated with changes in mood, emotional processing, and social cognition. Overall, the relationship between epilepsy and emotion is vastly complex; when assessing emotional difficulties in a person with epilepsy, we must consider the psychosocial impact of the disease on the patient, the underlying pathophysiology of the disease, and the effects of ongoing treatments.

Mobile health: the power of wearables, sensors, and apps to transform clinical trials

Mobile technology has become a ubiquitous part of everyday life, and the practical utility of mobile devices for improving human health is only now being realized. Wireless medical sensors, or mobile biosensors, are one such technology that is allowing the accumulation of real‐time biometric data that may hold valuable clues for treating even some of the most devastating human diseases. From wearable gadgets to sophisticated implantable medical devices, the information retrieved from mobile technology has the potential to revolutionize how clinical research is conducted and how disease therapies are delivered in the coming years. Encompassing the fields of science and engineering, analytics, health care, business, and government, this report explores the promise that wearable biosensors, along with integrated mobile apps, hold for improving the quality of patient care and clinical outcomes. The discussion focuses on groundbreaking device innovation, data optimization and validation, commercial platform integration, clinical implementation and regulation, and the broad societal implications of using mobile health technologies.

Patients optimizing epilepsy management via an online community The POEM Study

Objective: The study objective was to test whether engaging in an online patient community improves self-management and self-efficacy in veterans with epilepsy. Methods: The study primary outcomes were validated questionnaires for self-management (Epilepsy Self-Management Scale [ESMS]) and self-efficacy (Epilepsy Self-Efficacy Scale [ESES]). Results were based on within-subject comparisons of pre- and postintervention survey responses of veterans with epilepsy engaging with the PatientsLikeMe platform for a period of at least 6 weeks. Analyses were based on both completer and intention-to-treat scenarios. Results: Of 249 eligible participants enrolled, 92 individuals completed both surveys. Over 6 weeks, completers improved their epilepsy self-management (ESMS total score from 139.7 to 142.7, p = 0.02) and epilepsy self-efficacy (ESES total score from 244.2 to 254.4, p = 0.02) scores, with greatest impact on an information management subscale (ESMS–information management total score from 20.3 to 22.4, p < 0.001). Results were similar in intention-to-treat analyses. Median number of logins, postings to forums, leaving profile comments, and sending private messages were more common in completers than noncompleters. Conclusions: An internet-based psychosocial intervention was feasible to implement in the US veteran population and increased epilepsy self-management and self-efficacy scores. The greatest improvement was noted for information management behaviors. Patients with chronic conditions are increasingly encouraged to self-manage their condition, and digital communities have potential advantages, such as convenience, scalability to large populations, and building a community support network. Classification of evidence: This study provides Class IV evidence that for patients with epilepsy, engaging in an online patient community improves self-management and self-efficacy.

Intrinsic Fluorescence Studies of the Chaperonin GroEL Containing Single Tyr → Trp Replacements Reveal Ligand-induced Conformational Changes

Two mutants of GroEL containing the single tyrosine to tryptophan replacement of either residue 203 or 360 in the apical domain have been purified, characterized, and used for fluorescence studies. Both mutants can facilitate the in vitro refolding of rhodanese in an ATP- and GroES-dependent manner, producing yields of recoverable activity comparable to the wild-type chaperonin. Y203W shows some increased hydrophobic exposure and easier urea-induced disassembly compared with wild-type or Y360W, although the unfolding of all the species was similar at high concentrations of urea. Intrinsic fluorescence studies of the two mutants reveal that nucleotide binding (ADP or AMP-PNP (adenosine 5′-(β,γ-imino)triphosphate)) induces conformational changes in the tetradecamer that are independent of the presence of the co-chaperonin, GroES. The K1/2 for this transition is approximately 5 μM for both mutants. Energy transfer experiments show that the tryptophan fluorescence of the Y360W mutant is partially quenched (∼50%) upon binding of the fluorescent, hydrophobic probe 4,4′-bis(1-anilino-8-naphthalenesulfonic acid), while the fluorescence of the Y203W mutant is significantly quenched (∼75%). These results are discussed in relation to the molecular mechanism for GroEL function.

Interest in a Digital Health Tool in Veterans With Epilepsy: Results of a Phone Survey

OBJECTIVE Online tools for managing chronic health conditions are becoming increasingly popular. Perceived benefits include ease of use, low costs, and availability but are contingent on patient engagement, Internet access, and digital literacy. This article describes data collected during the recruitment phase of a study evaluating an online self-management platform for epilepsy in a U.S. Veteran population. METHODS We used administrative data to identify and contact Veterans with a likely diagnosis of epilepsy in the Veterans Health Administration (VHA). Veterans who did not respond directly to a mailed invitation were recruited by phone to determine study interest and evaluate digital access. RESULTS Of the 2,143 Veterans mailed study invitations, phone calls were made to 1,789 who did not specifically decline participation. Among those reached by phone (n = 1,053): 295 (28%) expressed interest in the study and an online tool, 333 (19%) reported a lack of computer and/or Internet access and 425 (40%) were not interested for other reasons. CONCLUSIONS This study suggests an interest in online tools for managing health despite the fact that some Veterans lack computer and/or Internet access. As investment in digital health solutions grows, the VHA should prioritize the widespread provision of digital access to more Veterans.

Is seizure frequency variance a predictable quantity

There is currently no formal method for predicting the range expected in an individuals seizure counts. Having access to such a prediction would be of benefit for developing more efficient clinical trials, but also for improving clinical care in the outpatient setting.

When physicians disagree: a case of nonconvulsive status epilepticus.

ABSTRACT Differences of opinion among attending physicians, resident trainees, and nurses are not uncommon in hospital situations. When such cases arise, ethical dilemmas must be approached with mindfulness of basic ethics principles and communication. This article presents a case of nonconvulsive status epilepticus to highlight these considerations.

Common data elements for epilepsy mobile health systems

Common data elements (CDEs) are currently unavailable for mobile health (mHealth) in epilepsy devices and related applications. As a result, despite expansive growth of new digital services for people with epilepsy, information collected is often not interoperable or directly comparable. We aim to correct this problem through development of industry‐wide standards for mHealth epilepsy data.

The POEM study: Testing the impact of a digital health platform on U.S. veterans with epilepsy

Background PatientsLikeMe is a free online community where people with life-changing illnesses can find other patients like them, share their disease experiences and outcomes, and learn how to improve their care through peer-peer interactions. Over 250,000 patients across 2000+ conditions have joined PatientsLikeMe. Of these, over 8,300 are people living with epilepsy and associated seizure disorders. The PatientsLikeMe Epilepsy community was enhanced in 2010 and 2012 in collaboration with UCB. A user survey of 220 patients revealed many patient-reported benefits of using an online community, such as better management of medication side effects, decreased emergency department utilization, increased medication adherence, and better understanding of types of seizures experienced (Wicks P, et al. [2012]). Perceived benefits of sharing health data between people with epilepsy on an online platform, Epilepsy and Behavior, 23:16-23). The Veterans Health Administration (VHA) established the Epilepsy Centers of Excellence (ECOE) in 2008 to support the needs of Veterans dealing with epilepsy. The ECOE network consists of 4 regional centers and 16 epilepsy sites across the United States, serving thousands of patients annually. The VHA and ECOEs were interested in evaluating a novel online platform to support the needs of our VA patients.