Clinical outcomes among initial survivors of cryptogenic new-onset refractory status epilepsy (NORSE).

OBJECTIVE: New-onset refractory status epilepticus (NORSE) is a rare but severe clinical syndrome. Despite rigorous evaluation, the underlying cause is unknown in 30%-50% of patients and treatment strategies are largely empirical. The aim of this study was to describe clinical outcomes in a cohort of well-phenotyped, thoroughly investigated patients who survived the initial phase of cryptogenic NORSE managed in specialist centers. METHODS: Well-characterized cases of cryptogenic NORSE were identified through the EPIGEN and Critical Care EEG Monitoring Research Consortia (CCEMRC) during the period 2005-2019. Treating epileptologists reported on post-NORSE survival rates and sequelae in patients after discharge from hospital. Among survivors >6 months post-discharge, we report the rates and severity of active epilepsy, global disability, vocational, and global cognitive and mental health outcomes. We attempt to identify determinants of outcome. RESULTS: Among 48 patients who survived the acute phase of NORSE to the point of discharge from hospital, 9 had died at last follow-up, of whom 7 died within 6 months of discharge from the tertiary care center. The remaining 39 patients had high rates of active epilepsy as well as vocational, cognitive, and psychiatric comorbidities. The epilepsy was usually multifocal and typically drug resistant. Only a minority of patients had a good functional outcome. Therapeutic interventions were heterogenous during the acute phase of the illness. There was no clear relationship between the nature of treatment and clinical outcomes. SIGNIFICANCE: Among survivors of cryptogenic NORSE, longer-term outcomes in most patients were life altering and often catastrophic. Treatment remains empirical and variable. There is a pressing need to understand the etiology of cryptogenic NORSE and to develop tailored treatment strategies.

LoVE in a time of CoVID: Clinician and patient experience using telemedicine for chronic epilepsy management.

As part of our ongoing interest in patient- and family-centered care in epilepsy, we began, before the onset of the CoVID-19 pandemic, to evaluate the concerns and preferences of those delivering and receiving care via telemedicine. CoVID-19 arrived and acted as an unexpected experiment in nature, catalyzing telemedicine's widespread implementation across many disciplines of medicine. The arrival of CoVID-19 in Ireland gave us the opportunity to record these perceptions pre- and post-CoVID. Data were extracted from the National Epilepsy Electronic Patient Record (EEPR). Power BI Analytics collated data from two epilepsy centers in Dublin. Analysis of data on reasons for using the telephone support line was conducted. A subset of patients and clinicians who attended virtual encounters over both periods were asked for their perception of telemedicine care through a mixed methods survey. Between 23rd December 2019 and 23rd March 2020 (pre-CoVID era), a total of 1180 patients were seen in 1653 clinical encounters. As part of a telemedicine pilot study, 50 of these encounters were scheduled virtual telephone appointments. Twenty eight surveys were completed by clinicians and 18 by patients during that period. From 24th March 2020 to 24th June 2020, 1164 patients were seen in 1693 encounters of which 729 (63%) patients were seen in 748 scheduled virtual encounters. 118 clinician impressions were captured through an online survey and 75 patients or carers completed a telephone survey during the post-CoVID era. There was no backlog of appointments or loss of care continuity forced by the pandemic. Clinicians expressed strong levels of satisfaction, but some doubted the suitability of new patients to the service or candidates for surgery receiving care via telemedicine. Patients reported positive experiences surrounding telephone appointments comparing them favorably to face-to-face encounters. The availability of a shared EEPR demonstrated no loss of care contact for patients with epilepsy. The survey showed that telemedicine is seen as an effective and satisfactory method of delivering chronic outpatient care.

Patients' Experiences of Remote Neurology Consultations during the COVID-19 Pandemic.

Telemedicine has been widely implemented during the COVID-19 global pandemic to enable continuity of care of chronic illnesses. We modified our general neurology clinic to be conducted using remote audio-only telephone consultations. We included all patients over a 10-week period who agreed to both a telephone consultation and a questionnaire afterwards in order to ascertain the patient's perspective of the experience. There were 212 participants consisting of men (43.8%) and women (56.2%). The mean ± standard deviation of age was 47.8 ± 17.0 (range 17-93) years. For the most part, patients found remote consultations either "just as good" (67.1%) or "better" (9.0%) than face-to-face consultations. Those who deemed it to be "not as good" were significantly older (52.3 ± 17.9 years vs. 46.6 ± 16.6 years, p =0.045) or were more likely to have a neurological disorder that required clinical examination, namely, a neuromuscular condition (66.7%, p = 0.002) or an undiagnosed condition (46.7%, p = 0.031). At the height of the COVID-19 global pandemic, most patients were satisfied with remote consultations. The positive feedback for remote consultations needs to be verified outside of this unique scenario because the results were likely influenced by the patients' apprehension to attend the hospital amongst other factors.

Computed tomography and emergency department frequency in homeless patients with seizures.

Seizures are a common presentation to emergency departments in homeless patients. Seizures and epilepsy are often poorly managed in homeless patients. In this retrospective study, conducted in a large urban university hospital; we compared the number emergency department presentations and associated head computed tomography studies in a cohort of 88 homeless patients with seizures to an age and gender-matched housed cohort of patients over a five-year period. We found that homeless patients had a significantly increased number of presentations to the emergency department and a significantly higher number of head computed tomography, with a resulting increase in radiation exposure.

Improving access to epilepsy care for homeless patients in the Dublin Inner City: a collaborative quality improvement project joining hospital and community care.

Homelessness is associated with significant psychosocial and health disparities. The rate of epilepsy among this cohort is eight times greater than that in the settled population, and the associated morbidity is higher due to lack of integrated care, difficulties with treatment adherence, substance abuse and poor social circumstances. There is a high rate of seizure-related death in homeless patients. Seizures are one of the most common neurological cause for emergency department presentation among this population. The aim of this quality improvement project was to use a multistakeholder co-production approach to design a new pathway of care for homeless patients with epilepsy to improve access to specialist epilepsy care and to strengthen the links between hospital and community teams who manage this population. After several years of observation, stakeholder engagement and numerous tests of change, we have created a new care pathway and developed bespoke tools for primary care providers and for physicians working in the emergency department to enable them to assess and manage patients as they present, as well as provide access to remote epilepsy specialist support.

Acute catatonia on medical wards: a case series.

BACKGROUND: Catatonia is a behavioral syndrome which presents with an inability to move normally. It is associated with mood disorders and schizophrenia, as well as with medical and neurological conditions. It is an expression of the severity of the underlying condition. The awareness of catatonia among general medical doctors and even psychiatrists is poor. It is often seen as an historical diagnosis. Because of this, catatonia is often not recognized. If patients in catatonic states are not diagnosed, their condition is likely to progress with a risk of increased morbidity and potentially fatal outcomes. CASE PRESENTATION: We present a case series of three acutely unwell, frail, elderly medical patients (a 65-year-old Irish woman, a 75-year-old Irish woman, and a 68-year-old Irish woman) with a background of longstanding well-controlled psychiatric illnesses, who developed acute catatonia while being treated for medical conditions in a general medical in-patient setting. CONCLUSIONS: Catatonia is common in acute medical settings but is underdiagnosed due to the low awareness of the condition among both general medical doctors and psychiatrists. Within a short time period, we diagnosed and successfully treated three acutely unwell patients in acute medical settings. We would like to increase the awareness of catatonia among medical doctors.