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Elsberg syndrome is a rare cause of lumbosacral radiculitis with concomitant thoracic and lumbosacral myelitis that can be seen after an acute or reactivated viral infection. After the initial coronavirus surge in New York City, a 68-year-old man developed progressive lower extremity weakness and a defined sensory level at the lower abdomen. He had highly elevated SARS-CoV-2 IgG antibodies despite an absence of preceding COVID-19 symptoms. Serial electrodiagnostic testing revealed absent lower extremity late responses, with otherwise normal distal sensorimotor conductions. Electromyography revealed active neurogenic changes and reduced motor unit recruitment in the L3-L4 myotomes. Treatment with methylprednisolone and intravenous immunoglobulin was followed by minimal clinical improvement but re-emergence of the lower extremity late responses on electrodiagnostic testing. We report here, to the best of our knowledge, the first case of suspected COVID-19-associated Elsberg syndrome, which expands the spectrum of neuromuscular manifestations associated with SARS-CoV-2 infection and sheds light on ways to approach diagnostic and treatment options for these patients.

ObjectiveTo assess the implementation of teleneurology (TN), including patient and clinician experiences, during the coronavirus respiratory disease 2019 (COVID-19) pandemic.MethodsWe studied synchronous (video visit) and asynchronous (store-and-forward, patient-portal evaluation, remote monitoring) TN utilization in the Mount Sinai Health System Neurology Department in New York, 2 months before and after the start of our department's response to the pandemic in mid-March 2020. Weekly division meetings enabled ongoing assessments and analysis of barriers and facilitators according to the Consolidated Framework for Implementation Research and the Expert Recommendations for Implementing Change models. We used postvisit surveys of clinicians (from April 13 to May 15, 2020) and patients (from May 11 to 15, 2020) to determine technology platforms used, and TN experience and acceptability, using Likert scales (1 = very poor/unlikely to 5 = very good/likely).ResultsOver the 4-month period, 117 TN clinicians (n = 14 subspecialties) conducted 4,225 TN visits with 3,717 patients (52 pre- vs 4,173 post–COVID-19). No asynchronous TN services were delivered. Post–COVID-19, the number of TN clinicians, subspecialties performing TN, and visits increased by 963%, 133%, and 7,925%, respectively. Mean acceptability among patients and clinicians was 4.7 (SD 0.6) and 3.4 (SD 1.6), respectively. Most video visits were completed using Epic MyChart (78.5%) and Zoom (8.1%). TN implementation facilitators included Medicare geographic restriction waivers, development of clinician educational materials, and MyChart outreach programs for patients experiencing technical difficulties.ConclusionsA significant expansion of TN utilization accompanied the COVID-19 response. Patients found TN more acceptable than did clinicians. Proactive application of an implementation framework facilitated rapid and effective TN expansion.

Background The 2016 U.S. Centers for Disease Control Opioid Prescribing Guideline (CDC Guideline) is currently being revised amid concern that it may be harmful to people with chronic pain on long-term opioid therapy (CP-LTOT). However, a methodology to faithfully implement the CDC guideline, measure prescriber adherence, and systematically test its effect on patient and public health outcomes is lacking. We developed and tested a CDC Guideline implementation strategy (termed TOWER), focusing on an outpatient HIV-focused primary care setting. Methods TOWER was developed in a stakeholder-engaged, multi-step iterative process within an Information, Motivation and Behavioral Skills (IMB) framework of behavior change. TOWER consists of: 1) a patient-facing opioid management app (OM-App); 2) a progress note template (OM-Note) to guide the office visit; and 3) a primary care provider (PCP) training. TOWER was evaluated in a 9-month, randomized-controlled trial of HIV-PCPs (N = 11) and their patients with HIV and CP-LTOT (N = 40). The primary outcome was CDC Guideline adherence based on electronic health record (EHR) documentation and measured by the validated Safer Opioid Prescribing Evaluation Tool (SOPET). Qualitative data including one-on-one PCP interviews were collected. We also piloted patient-reported outcome measures (PROMs) reflective of domains identified as important by stakeholders (pain intensity and function; mood; substance use; medication use and adherence; relationship with provider; stigma and discrimination). Results PCPs randomized to TOWER were 48% more CDC Guideline adherent (p Conclusions CDC-guideline adherence can be promoted and measured, and is not associated with worsening of outcomes for people with HIV receiving LTOT for CP. Future work would be needed to document scalability of these results and to determine whether CDC-guideline adherence results in a positive effect on public health. Trial registrationhttps://clinicaltrials.gov/ct2/show/NCT03669939. Registration date: 9/13/2018

Key Points Question Is a team-based community health worker and advanced practice clinician (including nurse practitioners or physician assistants) intervention emphasizing evidence-based care, self-management, lifestyle change, and medication adherence superior to usual care for controlling blood pressure after stroke in safety-net settings? Findings In this randomized clinical trial that included 487 adults with recent stroke or transient ischemic attack, there was no difference between usual care and the multifaceted team-based intervention in blood pressure control at 12 months. Meaning These findings suggest that additional research is needed to determine the optimal care model for controlling risk factors after stroke in safety-net settings., This randomized clinical trial examines the effect of a multifaceted team intervention vs usual care on systolic blood pressure (SBP) among patients with stroke or transient ischemic attack (TIA) in safety-net settings., Importance Few stroke survivors meet recommended cardiovascular goals, particularly among racial/ethnic minority populations, such as Black or Hispanic individuals, or socioeconomically disadvantaged populations. Objective To determine if a chronic care model–based, community health worker (CHW), advanced practice clinician (APC; including nurse practitioners or physician assistants), and physician team intervention improves risk factor control after stroke in a safety-net setting (ie, health care setting where all individuals receive care, regardless of health insurance status or ability to pay). Design, Setting, and Participants This randomized clinical trial included participants recruited from 5 hospitals serving low-income populations in Los Angeles County, California, as part of the Secondary Stroke Prevention by Uniting Community and Chronic Care Model Teams Early to End Disparities (SUCCEED) clinical trial. Inclusion criteria were age 40 years or older; experience of ischemic or hemorrhagic stroke or transient ischemic attack (TIA) no more than 90 days prior; systolic blood pressure (BP) of 130 mm Hg or greater or 120 to 130 mm Hg with history of hypertension or using hypertensive medications; and English or Spanish language proficiency. The exclusion criterion was inability to consent. Among 887 individuals screened for eligibility, 542 individuals were eligible, and 487 individuals were enrolled and randomized, stratified by stroke type (ischemic or TIA vs hemorrhagic), language (English vs Spanish), and site to usual care vs intervention in a 1:1 fashion. The study was conducted from February 2014 to September 2018, and data were analyzed from October 2018 to November 2020. Interventions Participants randomized to intervention were offered a multimodal coordinated care intervention, including hypothesized core components (ie, ≥3 APC clinic visits, ≥3 CHW home visits, and Chronic Disease Self-Management Program workshops), and additional telephone visits, protocol-driven risk factor management, culturally and linguistically tailored education materials, and self-management tools. Participants randomized to the control group received usual care, which varied by site but frequently included a free BP monitor, self-management tools, and linguistically tailored information materials. Main Outcomes and Measures The primary outcome was change in systolic BP at 12 months. Secondary outcomes were non–high density lipoprotein cholesterol, hemoglobin A1c, and C-reactive protein (CRP) levels, body mass index, antithrombotic adherence, physical activity level, diet, and smoking status at 12 months. Potential mediators assessed included access to care, health and stroke literacy, self-efficacy, perceptions of care, and BP monitor use. Results Among 487 participants included, the mean (SD) age was 57.1 (8.9) years; 317 (65.1%) were men, and 347 participants (71.3%) were Hispanic, 87 participants (18.3%) were Black, and 30 participants (6.3%) were Asian. A total of 246 participants were randomized to usual care, and 241 participants were randomized to the intervention. Mean (SD) systolic BP improved from 143 (17) mm Hg at baseline to 133 (20) mm Hg at 12 months in the intervention group and from 146 (19) mm Hg at baseline to 137 (22) mm Hg at 12 months in the usual care group, with no significant differences in the change between groups. Compared with the control group, participants in the intervention group had greater improvements in self-reported salt intake (difference, 15.4 [95% CI, 4.4 to 26.0]; P = .004) and serum CRP level (difference in log CRP, −0.4 [95% CI, −0.7 to −0.1] mg/dL; P = .003); there were no differences in other secondary outcomes. Although 216 participants (89.6%) in the intervention group received some of the 3 core components, only 35 participants (14.5%) received the intended full dose. Conclusions and Relevance This randomized clinical trial of a complex multilevel, multimodal intervention did not find vascular risk factor improvements beyond that of usual care; however, further studies may consider testing the SUCCEED intervention with modifications to enhance implementation and participant engagement. Trial Registration ClinicalTrials.gov Identifier: NCT01763203

Background: Elsberg syndrome is a rare cause of lumbosacral radiculitis with concomitant thoracic or lumbosacral myelitis that can be seen following an acute or reactivated viral infection. COVID-19 disease, caused by the SARS-CoV-2 virus, has quickly spread to a global pandemic since its first discovery in the winter of 2019. During this time, there has been an increasing number of case reports describing SARS-CoV-2 associated neuroinflammatory disease.Case Presentation: A 68-year-old man presented in June 2020 with a fall due to progressive lower extremity weakness and numbness, occurring shortly after the initial coronavirus surge in New York City. He developed ascending numbness to the level of the lower abdomen over the preceding month. He subsequently experienced low back pain, and gastrointestinal and genitourinary dysfunction. An extensive laboratory and radiologic evaluation ensued which was notable for elevated SARS-CoV-2 IgG antibodies despite an absence of preceding COVID-19 symptoms. Initial electrodiagnostic testing was notable for absent late responses in the lower extremity nerve conductions with normal distal sensorimotor conductions, and incomplete muscle activation with otherwise normal motor unit morphology and recruitment on electromyography. Repeat testing two weeks later revealed similar nerve conductions, but also the interval development of active neurogenic changes and reduced motor unit recruitment in the L3-L4 myotomes. This was suggestive of a lower thoracic and lumbosacral myelopathy and lumbosacral polyradiculopathy without peripheral neuropathy. A diagnosis of Elsberg syndrome was made and treatment with intravenous methylprednisolone yielded mild clinical improvement and the electrodiagnostic re-emergence of the lower extremity late responses.Conclusions: We report here, to our knowledge, the first case of suspected COVID-19 associated Elsberg syndrome, which may help to shed light on ways in which to approach diagnostic and treatment options in COVID-19 patients presenting with uncommon neurological and autonomic manifestations.

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

Background and Purpose: Self-management programs may improve quality of life and self-efficacy for stroke survivors, but participation is low. In a randomized controlled trial of a complex, multidisciplinary, team-based secondary stroke prevention intervention, we offered participants Chronic Disease Self-Management Program (CDSMP) workshops in addition to clinic visits and home visits. To enhance participation, workshops were facilitated by community health workers who were culturally and linguistically concordant with most participants and scheduled CDSMP sessions at convenient venues and times. Over time, we implemented additional strategies such as free transportation and financial incentives. In this study, we aimed to determine factors associated with CDSMP participation and attendance. Methods: From 2014 to 2018, 18 CDSMP workshop series were offered to 241 English and Spanish-speaking individuals (age ≥40 years) with recent stroke or transient ischemic attack. Zero-inflated Poisson regression was used to identify factors associated with participation and attendance (ie, number of sessions attended) in CDSMP. Missing values were imputed using multiple imputation methods. Results: Nearly one-third (29%) of intervention subjects participated in CDSMP. Moderate disability and more clinic/home visits were associated with participation. Participants with higher numbers of clinic and home visits (incidence rate ratio [IRR], 1.06 [95% CI, 1.01–1.12]), severe (IRR, 2.34 [95% CI, 1.65–3.31]), and moderately severe disability (IRR, 1.55 [95% CI, 1.07–2.23]), and who enrolled later in the study (IRR, 1.12 [95% CI, 1.08–1.16]) attended more sessions. Individuals with higher chaos scores attended fewer sessions (IRR, 0.97 [95% CI, 0.95–0.99]). Conclusions: Less than one-third of subjects enrolled in the SUCCEED (Secondary Stroke Prevention by Uniting Community and Chronic Care Model Teams Early to End Disparities) intervention participated in CDSMP; however, participation improved as transportation and financial barriers were addressed. Strategies to address social determinants of health contributing to chaos and engage individuals in healthcare may facilitate attendance. Registration: URL: https://www.clinicaltrials.gov . Unique identifier: NCT01763203.

Background A recent nurse-led, telephone-administered 18-month intervention, Care Coordination for Health Promotion and Activities in Parkinson’s Disease (CHAPS), was tested in a randomized controlled trial and improved care quality. Therefore, intervention details on nurse care manager activity (types and frequencies) and participant actions are needed to support potential dissemination. Activities include nurse care manager use of a holistic organizing framework, identification of Parkinson's disease (PD)-related problems/topics, communication with PD specialists and care coordination, participant coaching, and participant self-care actions including use of a notebook self-care tool. Methods This article reports descriptive data on the CHAPS intervention. The study setting was five sites in the Veterans Affairs Healthcare System. Sociodemographic data were gathered from surveys of study participants (community-dwelling veterans with PD). Nurse care manager intervention activities were abstracted from electronic medical records and logbooks. Statistical analysis software was used to provide summary statistics; closed card sorting was used to group some data. Results Intervention participants (n = 140) were primarily men, mean age 69.4 years (standard deviation 10.3) and community-dwelling. All received the CHAPS Initial Assessment, which had algorithms designed to identify 31 unique CHAPS standard problems/topics. These were frequently documented (n = 4938), and 98.6% were grouped by assigned domain from the Organizing Framework (Siebens Domain Management Model™). Nurse care managers performed 27 unique activity types to address identified problems, collaborating with participants and PD specialists. The two most frequent unique activities were counseling/emotional support (n = 387) and medication management (n = 349). Both were among 2749 total performed activities in the category Implementing Interventions (coaching). Participants reported unique self-care action types (n = 23) including use of a new notebook self-care tool. Conclusions CHAPS nurse care managers implemented multiple activities including participant coaching and care coordination per the CHAPS protocol. Participants reported various self-care actions including use of a personalized notebook. These findings indicate good quality and extent of implementation, contribute to ensuring reproducibility, and support CHAPS dissemination as a real-world approach to improve care quality. Trial registration ClinicalTrials.gov as NCT01532986, registered on January 13, 2012.

Supplemental Digital Content is available in the text., Background and Purpose— Lowering blood pressure and cholesterol, antiplatelet/antithrombotic use, and smoking cessation reduce risk of recurrent stroke. However, gaps in risk factor control among stroke survivors warrant development and evaluation of alternative care delivery models that aim to simultaneously improve multiple risk factors. Randomized trials of care delivery models are rarely of sufficient duration or size to be powered for low-frequency outcomes such as observed recurrent stroke. This creates a need for tools to estimate how changes across multiple stroke risk factors reduce risk of recurrent stroke. Methods— We reviewed existing evidence of the efficacy of interventions addressing blood pressure reduction, cholesterol lowering, antiplatelet/antithrombotic use, and smoking cessation and extracted relative risks for each intervention. From this, we developed a tool to estimate reductions in recurrent stroke risk, using bootstrapping and simulation methods. We also calculated a modified Global Outcome Score representing the proportion of potential benefit (relative risk reduction) achieved if all 4 individual risk factors were optimally controlled. We applied the tool to estimate stroke risk reduction among 275 participants with complete 12-month follow-up data from a recently published randomized trial of a healthcare delivery model that targeted multiple stroke risk factors. Results— The recurrent stroke risk tool was feasible to apply, yielding an estimated reduction in the relative risk of ischemic stroke of 0.36 in both the experimental and usual care trial arms. Global Outcome Score results suggest that participants in both arms likely averted, on average, 45% of recurrent stroke events that could possibly have been prevented through maximal implementation of interventions for all 4 individual risk factors. Conclusions— A stroke risk reduction tool facilitates estimation of the combined impact on vascular risk of improvements in multiple stroke risk factors and provides a summary outcome for studies testing alternative care models to prevent recurrent stroke. Registration— URL: https://www.clinicaltrials.gov; Unique identifier: NCT00861081.

Although healthy lifestyle practices mitigate recurrent stroke risk and mortality, few stroke survivors adhere to them, particularly among socioeconomically disadvantaged communities. We developed and pilot tested a occupational therapy-based lifestyle management intervention, Healthy Eating And Lifestyle after Stroke (HEALS), to improve stroke survivors' self-management skills relating to diet and physical activity and evaluated it in a diverse safety-net population.One hundred English- or Spanish-speaking participants with stroke or transient ischemic attack were randomized to a 6-week occupational therapist-led group lifestyle intervention vs. usual care. Each of the six 2-h group sessions included didactic presentations on diet and physical activity, peer exchange, personal exploration with goal setting, and direct experience through participation in a relevant activity. Primary outcomes at 6 months were change in body mass index, fruit/vegetable intake, and physical activity. Secondary outcomes included change in waist circumference, smoking, blood pressure, high-density lipoprotein, low-density lipoprotein, triglyceride, total cholesterol, glycosylated hemoglobin levels, quality of care, and perceptions of care. Effect sizes were determined in preparation for a larger randomized controlled trial powered to detect a difference in primary outcomes. A nested formative evaluation assessed facilitators and barriers to implementation, acceptance, and intervention adherence.There were no significant changes in primary or secondary outcomes at 6 months. Effect sizes for all outcomes were small ( 0.2). Focus group participants recommended extending the intervention program duration with more sessions, additional information on stroke and vascular risk factors, an interdisciplinary approach, additional family involvement, and incentives. Providers recommended longer program duration, more training, fidelity checks to ensure standardized program delivery, and additional incentives for participants.The HEALS intervention was feasible in a safety-net setting, but effect sizes were small. A longer-duration intervention, with intervener fidelity checks may be warranted.NCT01550822.

Anxiety and depression have been associated with poor seizure control after epilepsy surgery. This study explored the effect of presurgical anxiety or depression on two- and five-year seizure control outcomes.Adult subjects were enrolled between 1996 and 2001 in a multicenter prospective study to evaluate outcomes of resective epilepsy surgery. A Poisson regression was used to analyze the association of depression and anxiety with surgical outcome, while adjusting for gender, age, ethnicity, number of years with seizures, and presence of mesial temporal sclerosis.The relative risk (RR) of presurgical depression on two-year seizure-free outcome in this cohort is 1.12 (95% confidence interval (CI), 0.84-1.49) and 1.06 (CI, 0.73-1.55) on five-year seizure free outcome. The RR of presurgical anxiety on two-year seizure outcome is 0.73 (CI, 0.50-1.07) and 0.70 (CI, 0.43-1.17) on five-year seizure outcome. When including Engel classes I and II, the RRs of presurgical depression, anxiety, or both two years after surgery were 0.96 (p=0.59), 0.73 (p0.05), and 0.97 (p=0.70), respectively, and they were 0.97 (p=0.82), 0.84 (p=0.32), and 0.89 (p=0.15), respectively, five years after surgery. Only presurgical anxiety was associated with worse epilepsy surgery outcome two year after surgery but not at five years postsurgery. Depression was not a risk factor for poor epilepsy surgical outcome in the long term.These findings from a prospective study that utilized a standardized protocol for psychiatric and seizure outcome assessment suggest that presurgical mood disorders have no substantial impact on postsurgical seizure outcome for up to five years after surgery.

Background Stroke survivors have high rates of subsequent cardiovascular and recurrent cerebrovascular events, and mortality. While healthy lifestyle practices - including a diet rich in fruits and vegetables, limited alcohol intake, and regular physical activity - can mitigate these outcomes, few stroke survivors adhere to them. Minorities from socioeconomically disadvantaged communities who obtain care in safety-net health systems experience the most barriers to implementing healthy lifestyle changes after stroke. Purpose To report the design of Healthy Eating and Lifestyle After Stroke (HEALS), a randomized controlled trial (RCT) was designed to test the feasibility of using a manualized, lifestyle management intervention in a safety-net setting to improve lifestyle practices among ethnically diverse individuals with stroke or transient ischemic attack (TIA). Methods Design: Pilot RCT. Participants: Inclusion criteria: 1) Adults (≥40 years) with ischemic stroke or TIA (≥ 90 days prior); 2) English- or Spanish-speaking. Setting: Outpatient clinic, safety-net setting. Intervention: Weekly two-hour small group sessions led by an occupational therapist for six weeks. The sessions focused on implementing nutrition, physical activity, and self-management strategies tailored to each participant's goals. Main Outcome Measures: Body mass index, diet, and physical activity. Conclusions Recruitment for this study is complete. If the HEALS intervention study is feasible and effective, it will serve as a platform for a large-scale RCT that will investigate the efficacy and cost-effectiveness of life management interventions for racially and ethnically diverse, low-income individuals with a history of stroke or TIA who seek healthcare in the safety-net system.

SummaryObjective We aimed to compare long-term social outcomes in young adults with childhood-onset epilepsy (cases) with neurologically normal sibling controls. Methods Long-term social outcomes were assessed at the 15-year follow-up of the Connecticut Study of Epilepsy, a community-based prospective cohort study of children with newly diagnosed epilepsy. Young adults with childhood-onset epilepsy with complicated (abnormal neurologic exam findings, abnormal brain imaging with lesion referable to epilepsy, intellectual disability (ID; IQ < 60) or informative history of neurologic insults to which the occurrence of epilepsy might be attributed), and uncomplicated epilepsy presentations were compared to healthy sibling controls. Age, gender, and matched-pair adjusted generalized linear models stratified by complicated epilepsy and 5-year seizure-free status estimated adjusted odds ratios (aORs) and 95% confidence intervals [CIs] for each outcome. Results The 15-year follow-up included 361 individuals with epilepsy (59% of initial cases; N = 291 uncomplicated and N = 70 complicated epilepsy; mean age 22 years [standard deviation, SD 3.5]; mean epilepsy onset 6.2 years [SD 3.9]) and 173 controls. Social outcomes for cases with uncomplicated epilepsy with ≥5 years terminal remission were comparable to controls; cases with uncomplicated epilepsy

Background: Minority and socioeconomically disadvantaged individuals are underrepresented in secondary stroke prevention trials. Little is known about factors associated with study retention in these populations. Objective: To evaluate the impact of sociodemographic characteristics on retention in the Secondary stroke prevention by Uniting Community and Chronic care model teams Early to End Disparities (SUCCEED) trial. Methods: 487 participants ≥40 years with stroke/TIA were recruited from 4 safety-net hospitals and 1 stroke center serving low income zip codes. Strategies for boosting retention included: having bilingual research assistants from similar cultures establish rapport and follow participants; culturally and linguistically tailoring materials; arranging visits around participants’ schedules; offering transportation, and conducting assessments in the home and community. We compared sociodemographic characteristics among those retained at 12 months (n=412) vs. those not retained (n=75) using t-test, Chi Square, and Fisher exact tests. Independent factors associated with retention were determined using logistic regression. Results: Average age was 57 years, 18% were black, 71% were Hispanic, 58% were Spanish-speaking, and 72% were born outside the US. 12-month retention was 85%. On bivariate analysis, factors associated with retention were: Spanish-speaking, Hispanic ethnicity, younger age, born outside the US, and married status (all p Discussion: In this secondary prevention trial of stroke survivors from predominantly minority backgrounds, younger age, marriage, and insurance were associated with retention, suggesting that addressing barriers in the elderly, and those without insurance or spousal support may be beneficial. Financial constraints were associated with retention suggesting that study participation appealed to more socioeconomically vulnerable individuals.

Background: Approximately 25 million people in the US are Limited English Proficient (LEP). LEP individuals are more likely to feel dissatisfied with the quality of healthcare when compared to the English proficient, but little is known about LEP stroke survivors. Objective: To evaluate differences in stroke literacy, self-efficacy, and perceptions of healthcare delivery in English and Spanish-speaking individuals enrolled in the Secondary stroke prevention by Uniting Community and Chronic care model teams Early to End Disparities (SUCCEED) trial. Methods: SUCCEED participants were given the option of receiving the intervention in English or Spanish. Baseline differences in stroke literacy (Schneider et al), self-efficacy (General Self-Efficacy Scale), and perceptions of care (Patient Assessment of Chronic Illness Care and Consumer Assessment of Healthcare Providers and Systems) were compared using T-test, Chi Square, and Fisher Exact in individuals who chose Spanish vs. English. Results: Of 487 participants, 207 preferred English and 280 chose Spanish. Despite feeling more worried about having a stroke (77 % vs. 67%), and feeling at risk of having a stroke (63% vs. 45%), Spanish-speakers were less likely to identify 3 stroke risk factors (19% vs. 33%, all p Conclusion: Among stroke survivors, Spanish-speakers were more likely to have low stroke literacy, low self-efficacy, and a negative perception of healthcare delivery despite feeling that healthcare was accessible. Recognizing language barriers as a contributor to healthcare disparities, and tailoring interventions to address these barriers are crucial.

Many people with HIV (PWH) experience chronic pain that limits daily function and quality of life. PWH with chronic pain have commonly been prescribed opioids, sometimes for many years, and it is unclear if and how the management of these legacy patients should change in light of the current US opioid epidemic. Guidelines, such as the Centers for Disease Control and Prevention Guideline for Prescribing Opioids for Chronic Pain (CDCG), provide recommendations for the management of such patients but have yet to be translated into easily implementable interventions; there is also a lack of strong evidence that adhering to these recommendations improves patient outcomes such as amount of opioid use and pain levels. Herein we describe the development and preliminary testing of a theory-based intervention, called TOWER (TOWard SafER Opioid Prescribing), designed to support HIV primary care providers in CDCG-adherent opioid prescribing practices with PWH who are already prescribed opioids for chronic pain. TOWER incorporates the content of the CDCG into the theoretical and operational framework of the Information Motivation and Behavioral Skills (IMB) model of health-related behavior. The development process included elicitation research and incorporation of feedback from providers and PWH; testing is being conducted via an adaptive feasibility clinical trial. The results of this process will form the basis of a large, well-powered clinical trial to test the effectiveness of TOWER in promoting CDCG-adherent opioid prescribing practices and improving outcomes for PWH with chronic pain. Keywords: Chronic pain, Opioids, HIV

ObjectiveTo test effects on care quality of Chronic Care Model-based Parkinson disease (PD) management.MethodsThis 2-group stratified randomized trial involved 328 veterans with PD in southwestern United States. Guided care management, led by PD nurses, was compared to usual care. Primary outcomes were adherence to 18 PD care quality indicators. Secondary outcomes were patient-centered outcome measures. Data sources were telephone survey and electronic medical record (EMR). Outcomes were analyzed as intent-to-treat comparing initial and final survey and repeated-measures mixed-effects models.ResultsAverage age was 71 years; 97% of participants were male. Mean proportion of participants receiving recommended PD care indicators was significantly higher for the intervention than for usual care (0.77 vs 0.58) (mean difference 0.19, 95% confidence interval [CI] 0.16, 0.22). Of 8 secondary outcomes, the only significant difference of the changes over time was in the positive Patient Health Questionnaire–2 depression screen for intervention minus usual care (−11.52 [95% CI −20.42, −2.62]).ConclusionA nurse-led chronic care management intervention, Care Coordination for Health Promotion and Activities in Parkinson's Disease (CHAPS), substantially increased adherence to PD quality of care indicators among veterans with PD, as documented in the EMR. Of 8 secondary outcomes assessed, a screening measure for depressive symptomatology was the only measure that was better in the intervention compared to usual care. More telephone calls in CHAPS were the only utilization difference over usual care. While CHAPS appears promising for improving PD care, additional iterative research is needed to refine the CHAPS model in routine clinical care so that it measurably improves patient-centered outcomes (NCT01532986).Classification of evidenceThis study provides Class I evidence that for patients with PD, CHAPS increased adherence to PD quality of care indicators.

Lidia M V R Moura,1 Thiago S Carneiro,1 Andrew J Cole,1 John Hsu,2,3 Barbara G Vickrey,4 Daniel B Hoch1 1Department of Neurology, 2Mongan Institute for Health Policy, Department of Medicine, Massachusetts General Hospital, 3Department of Health Care Policy, Harvard Medical School, Boston, MA, 4Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, USA Background and aim: Adherence to treatment is a critical component of epilepsy management. This study examines whether addressing antiepileptic drug (AED) side effects at every visit is associated with increased patient-reported medication adherence.Patients and methods: This study identified 243 adults with epilepsy who were seen at two academic outpatient neurology settings and had at least two visits over a 3-year period. Demographic and clinical characteristics were abstracted. Evidence that AED side effects were addressed was measured through 1) phone interview (patient-reported) and 2) medical records abstraction (physician-documented). Medication adherence was assessed using the validated Morisky Medication Adherence Scale-4. Complete adherence was determined as answering “no” to all questions.Results: Sixty-two (25%) patients completed the interviews. Participants and nonparticipants were comparable with respect to demographic and clinical characteristics; however, a smaller proportion of participants had a history of drug-resistant epilepsy than nonparticipants (17.7% vs 30.9%, P=0.04). Among the participants, evidence that AED side effects were addressed was present in 48 (77%) medical records and reported by 51 (82%) patients. Twenty-eight (45%) patients reported complete medication adherence. The most common reason for incomplete adherence was missed medication due to forgetfulness (n=31, 91%). There was no association between addressing AED side effects (neither physician-documented nor patient-reported) and complete medication adherence (P=0.22 and 0.20).Discussion and conclusion: Among patients with epilepsy, addressing medication side effects at every visit does not appear to increase patient-reported medication adherence. Keywords: epilepsy, antiepileptic drug side effects, medication adherence&nbsp

The aim of this study was to compare physician encounter documentation with patient perceptions of quality of epilepsy care and examine the association between quality and patient assessment of provider communication.We identified 505 adult patients with epilepsy aged 18years or older over a 3-year period in two large academic medical centers. We abstracted individual, clinical, and care measures from 2723 electronic clinical notes written by physicians. We then randomly selected 245 patients for a phone interview. We compared patient perceptions of care with the documented care for several established epilepsy quality measures. We also explored the association of patient's perception of provider communication with provider documentation of key encounter interventions.There were 88 patients (36%) who completed the interviews. Fifty-seven (24%) refused to participate, and 100 (40%) could not be contacted. Participants and nonparticipants were comparable in their demographic and clinical characteristics; however, participants were more often seen by epilepsy specialists than nonparticipants (75% vs. 61.9%, p0.01). Quality scores based on patient perceptions differed from those determined by assessing the documentation in the medical record for several quality measures, e.g., documentation of side effects of antiseizure therapy (p=0.05), safety counseling (p0.01), and counseling for women of childbearing potential with epilepsy (McNemar's p=0.03; intraclass correlation coefficient, ICC=0.07). There was a significant, positive association between patient-reported counseling during the encounter (e.g., personalized safety counseling) and patient-reported scores of provider communication (p=0.05).The association between the patient's recollection of counseling during the visit and his/her positive perception of the provider's communication skills highlights the importance of spending time counseling patients about their epilepsy and not just determining if seizures are controlled.

Background: Minority, disadvantaged populations are often underrepresented in secondary stroke prevention trials despite known disparities in risk factor control. When they do enroll, retention is poor due to competing needs, transiency, unstable housing, transportation barriers, and inconsistent telephone access. Methods: We recruited 487 English- or Spanish-speaking adults (age >40 yrs) with a recent TIA or ischemic/hemorrhagic stroke, and systolic BP ≥130 mm Hg or diagnosed hypertension and SBP≥120mm Hg, from 4 Los Angeles County-Department of Health Services hospitals and 1 stroke center serving low income zip codes. We used recruitment and retention strategies from a prior trial; leadership and staff met regularly to track progress and design and implement new strategies. Meeting notes were reviewed to compile approaches . Results: Average age was 57.1 years; race/ethnicity was 71.4% Hispanic, 17.6% black, 6.4% Asian; 72.5% were born outside the US; 62.6% had not graduated high school; 40% rarely spoke English at home. Follow-up data collection was 440/487 (90%) at 3 months, 382/487 (78%) at 8 months, and 394/475 (83%) of eligibles at 12 months. Prior recruitment strategies used were bilingual research assistants (RAs) from similar cultural backgrounds, inpatient clinical team introduction of potential enrollees to RAs, embedding RAs on the inpatient unit, piloting and tailoring recruitment scripts prior to study initiation, and allowing potential participants to discuss the study with others prior to enrollment. Prior retention strategies used were obtaining ≥3 contact numbers at enrollment and reviewing medical records for upcoming appointments. New retention strategies developed and applied were offering in-home assessments, providing transportation, offering weekend/evening visits, using phone, mail, and registered mail to contact participants, routinely using the same RA for a given participant, and reminding patients of prior interactions with RAs/visits. Conclusion: To maximize retention and recruitment, the combined approach of beginning with a broad set of previously effective strategies, and tracking and developing new ones over the course of the trial was effective. Trial Registry Trial Number: NCT01763203

Background: Although healthy lifestyle practices mitigate stroke risk and mortality, few stroke survivors adhere to them, particularly among socioeconomically disadvantaged communities. We developed and pilot tested a lifestyle management intervention, HEALS, to improve stroke survivors’ diet and physical activity and tested it in a diverse population receiving care at a safety-net county facility. Methods: One hundred English- or Spanish-speaking participants with stroke or TIA were randomly assigned to a 6-week weekly occupational therapist-led group lifestyle intervention vs. usual care. Each 2 hour session included didactics, goal setting, activities, and peer exchange. Primary outcomes measured at baseline and 6 months were body mass index, abdominal obesity, fruit/vegetable intake, and physical activity. Secondary outcomes were blood pressure, high-density lipoprotein cholesterol, and glycosylated hemoglobin. Outcomes were compared with repeated measures analysis. Effect sizes for continuous variables were determined using partial eta-squared. A nested formative evaluation assessed facilitators and barriers to implementation, acceptance, and adherence to the intervention. Results: Mean age was 60 years, 62% were men, 68% were Hispanic, 60% were Spanish-speaking, 35% had ≤8 th grade education, 31% were working at enrollment, and 69% had modified Rankin scale Conclusions: The HEALS intervention was feasible in a safety-net setting, but the effect sizes were small. An RCT of a longer-duration intervention, with more formal provider training, may be warranted.

Introduction The Myotonic Dystrophy Health Index (MDHI) is a disease-specific patient-reported outcome measure. Here, we examine the associations between the MDHI and other measures of disease burden in a cohort of individuals with myotonic dystrophy type-1 (DM1). Methods We conducted a cross-sectional study of 70 patients with DM1. We examined the associations between MDHI total and subscale scores and scores from other clinical tests. Participants completed assessments of strength, myotonia, motor and respiratory function, ambulation, and body composition. Participants also provided blood samples, underwent physician evaluations, and completed other patient-reported outcome measures. Results MDHI total and subscale scores were strongly associated with muscle strength, myotonia, motor function, and other clinical measures. Conclusions Patient-reported health status, as measured by the MDHI, is associated with alternative measures of clinical health. These results support the use of the MDHI as a valid tool to measure disease burden in DM1 patients.

Objective We assessed the relationship between adherence to epilepsy quality measures (EQM) and seizure control over 2–3 years in a retrospective cohort study. Methods 6150 patients were identified at two large academic medical centers with a primary or secondary diagnosis of epilepsy, were 18–85 years old and seen in outpatient general neurology or epilepsy units between June 2011 and May 2014. Patients were included if: their initial visit was between June 2011 and June 2012, treatment was with ≥1 anti-seizure drug, there was ≥1 visit per year during the timeframe, and seizure frequency was documented at initial and final visits, yielding 162 patients/1055 visits from which socio-demographic, clinical and care quality data were abstracted. Quality care was assessed as (1) percent adherence to up to 8 eligible EQM, and (2) defect-free care (DFC: adherence to all eligible EQM). Seizure control (SC) was defined as ≥50% reduction in average seizures/month between initial and final visits. Chi-square and t-test compared care quality with seizure control. Logistic regression was used to assess the relationships between SC, quality of care and subspecialist involvement. Results Care quality, reflected by documentation of seizure frequency, addressing therapeutic interventions, and referral to a comprehensive epilepsy center, all exceeded 80% adherence. Care quality as reflected by documentation of seizure type, etiology or syndrome; assessment of side effects, counseling about epilepsy safety and women's issues, and screening for psychiatric disorders ranged from 40 to 57%. Mean EQM adherence across all applicable measures was associated with greater seizure control (p = 0.0098). DFC was low (=8%) and did not covary with seizure control (p = 0.55). The SC and non-SC groups only differed on epilepsy etiology (p = 0.04). Exploratory analysis showed that mean quality scores are associated with seizure control (OR = 4.9 [1.3–18.5], p = 0.017) while controlling for the effect of subspecialty involvement as a possible confounding variable. Conclusions Average quality of care but not defect-free care was associated with seizure control in this retrospective cohort.

Background Disparities of care among stroke survivors are well documented. Effective interventions to improve recurrent stroke preventative care in vulnerable populations are lacking. Methods and Results In a randomized controlled trial, we tested the efficacy of components of a chronic care model–based intervention versus usual care among 404 subjects having an ischemic stroke or transient ischemic attack within 90 days of enrollment and receiving care within the Los Angeles public healthcare system. Subjects had baseline systolic blood pressure (SBP) ≥120 mm Hg. The intervention included a nurse practitioner/physician assistant care manager, group clinics, self-management support, report cards, decision support, and ongoing care coordination. Outcomes were collected at 3, 8, and 12 months, analyzed as intention-to-treat, and used repeated-measures mixed-effects models. Change in SBP was the primary outcome. Low-density lipoprotein reduction, antithrombotic medication use, smoking cessation, and physical activity were secondary outcomes. Average age was 57 years; 18% were of black race; 69% were of Hispanic ethnicity. Mean baseline SBP was 150 mm Hg in both arms. SBP decreased to 17 mm Hg in the intervention arm and 14 mm Hg in the usual care arm; the between-arm difference was not significant (−3.6 mm Hg; 95% confidence interval, −9.2 to 2.2). Among secondary outcomes, the only significant difference was that persons in the intervention arm were more likely to lower their low-density lipoprotein Conclusions This intervention did not improve SBP control beyond that attained in usual care among vulnerable stroke survivors. A community-centered component could strengthen the intervention impact. Clinical Trial Registration URL: https://clinicaltrials.gov . Unique identifier: NCT00861081.

As a scientific field of study, neuroepidemiology encompasses more than just the descriptive study of the frequency, distribution, determinants and outcomes of neurologic diseases in populations. It also includes experimental aspects that span the full spectrum of clinical and population science research. As such, neuroepidemiology has a strong potential to inform implementation research for global stroke prevention and treatment. This review begins with an overview of the progress that has been made in descriptive and experimental neuroepidemiology over the past quarter century with emphasis on standards for evidence generation, critical appraisal of that evidence and impact on clinical and public health practice at the national, regional and global levels. Specific advances made in high-income countries as well as in low- and middle-income countries are presented. Gaps in implementation as well as evidence gaps in stroke research, stroke burden, clinical outcomes and disparities between developed and developing countries are then described. The continuing need for high quality neuroepidemiologic data in low- and middle-income countries is highlighted. Additionally, persisting disparities in stroke burden and care by sex, race, ethnicity, income and socioeconomic status are discussed. The crucial role that national stroke registries have played in neuroepidemiologic research is also addressed. Opportunities presented by new directions in comparative effectiveness and implementation research are discussed as avenues for turning neuroepidemiological insights into action to maximize health impact and to guide further biomedical research on neurological diseases.

Objective To assess costs and effectiveness of deep brain stimulation (DBS) of the internal globus pallidum (GPi) versus subthalamic nucleus (STN) from the provider and societal perspectives for Parkinson's disease (PD) patients in a multicenter randomized trial. Methods All costs from randomization to 36 months were included. Costs were from Department of Veterans Affairs (VA) and Medicare databases and clinical trial data. Quality adjusted life years (QALYs) were from Quality of Well Being questionnaires. Results Provider costs were similar for the 144 GPi and 130 STN patients (GPi: $138,044 vs. STN: $131,822; difference = $6,222, 95% confidence interval [CI]: -$42,125 to $45,343). Societal costs were also similar (GPi: $171,061 vs. STN: $167,706; difference = $3,356, 95% CI: -$57,371 to $60,294). The GPi patients had nonsignificantly more QALYs. Conclusions The QALYs and costs were similar; the level of uncertainty given the sample size suggests that these factors should not direct treatment or resource allocation decisions in selecting or making available either procedure for eligible PD patients.

Introduction: In preparation for clinical trials we examine the validity, reliability, and patient understanding of the Myotonic Dystrophy Health Index (MDHI). Methods: Initially we partnered with 278 myotonic dystrophy type-1 (DM1) patients and identified the most relevant questions for the MDHI. Next, we used factor analysis, patient interviews, and test–retest reliability assessments to refine and evaluate the instrument. Lastly, we determined the capability of the MDHI to differentiate between known groups of DM1 participants. Results: Questions in the final MDHI represent 17 areas of DM1 health. The internal consistency was acceptable in all subscales. The MDHI had a high test–retest reliability (ICC = 0.95) and differentiated between DM1 patient groups with different disease severities. Conclusions: Initial evaluation of the MDHI provides evidence that it is valid and reliable as an outcome measure for assessing patient-reported health. These results suggest that important aspects of DM1 health may be measured effectively using the MDHI. Muscle Nerve 49: 906–914, 2014

In recent years, physician burnout—characterized by symptoms of depersonalization, emotional exhaustion, and low sense of accomplishment—has been measured and is highly prevalent across many fields of medicine. Previous studies have shown that burnout is a major problem among US neurologists, with over 60% reporting symptomatology in at least one of these areas.1 Of considerable concern to our profession, health care delivery systems, and policy makers, is the solid evidence that burnout is associated with adverse patient safety and with physician turnover.2 In response to this mounting evidence, the Association of American Medical Colleges, the National Academy of Medicine, the American Academy of Neurology, and other professional bodies have been developing recommendations and interventions to address potential drivers of burnout. In 2018, the Accreditation Council for Graduate Medical Education faculty survey included for the first time questions measuring faculty well-being/burnout.3 While these measures are not yet being used to assess individual programs, proactive leaders are devoting resources toward addressing faculty well-being, in anticipation of possible accountability with respect to training program certification. The message for all is clear: medicine must identify the root causes of burnout, and more importantly, put the joy back in medicine. To ignore burnout now will change the future of how we practice and who chooses a career in medicine.

The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care--particularly epilepsy specialty and behavioral health care--and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.

The National Institute of Neurological Disorders and Stroke (NINDS) is the primary supporter of stroke research in the United States, investing more than $200 million annually in research to advance our understanding of the biology, causes, and risk factors of stroke; to develop effective prevention and treatment approaches; and to identify strategies to improve recovery and rehabilitation. In 2012, the NINDS completed a 2-phase planning process to identify the highest priority research areas in stroke. During the past decade, comprehensive reports from the NINDS Stroke Progress Review Group have provided valuable guidance to stroke investigators and the NINDS, shaping the national research agenda and helping the research community work together to advance stroke science. The third report from the Stroke Progress Review Group was made public in January 2012.1 This report served as the foundation for a prioritization process designed to identify a small set of the most promising research opportunities, with the potential to lead to significant advances if addressed with a focused effort during the next 5 to 10 years. Broad input was sought from the public and the research community through a request for information. Three working groups of scientific experts representing prevention, treatment, and recovery research participated in a Delphi-like review and rating process to identify the strongest ideas presented in the ≈180 request for information proposals received. Top priorities were then discussed, rerated, and strengthened at the Stroke Research Priorities Meeting held on August 29 and 30, 2012. Through this process, each of the working groups delivered 2 or 3 proposals, as well as 1 joint proposal (cross-cutting), that represent combined, modified, and optimized versions of the best ideas. An advisory workgroup of the NINDS Advisory Council, composed of scientific experts, stroke advocates, and stroke association representatives, led the overall process. Stroke poses a …

Object Low income, government insurance, and minority status are associated with delayed treatment for neurosurgery patients. Less is known about the influence of referral location and how socioeconomic factors and referral patterns evolve over time. For pediatric epilepsy surgery patients at the University of California, Los Angeles (UCLA), this study determined how referral location and sociodemographic features have evolved over 25 years. Methods Children undergoing epilepsy neurosurgery at UCLA (453 patients) were classified by location of residence and compared with clinical epilepsy and sociodemographic factors. Results From 1986 to 2010, referrals from Southern California increased (+33%) and referrals from outside of California decreased (−19%). Over the same period, the number of patients with preferred provider organization (PPO) and health maintenance organization (HMO) insurance increased (+148% and +69%, respectively) and indemnity insurance decreased (−96%). Likewise, the number of Hispanics (+117%) and Asians (100%) increased and Caucasians/whites decreased (−24%). The number of insurance companies decreased from 52 carriers per 100 surgical patients in 1986–1990 to 19 per 100 in 2006–2010. Patients living in the Eastern US had a younger age at surgery (−46%), shorter intervals from seizure onset to referral for evaluation (−28%) and from presurgical evaluation to surgery (−61%) compared with patients from Southern California. The interval from seizure onset to evaluation was shorter (−33%) for patients from Los Angeles County compared with those living in non-California Western US states. Conclusions Referral locations evolved over 25 years at UCLA, with more cases coming from local regions; the percentage of minority patients also increased. The interval from seizures onset to surgery was shortest for patients living farthest from UCLA but still within the US. Geographic location and race/ethnicity was not associated with differences in becoming seizure free after epilepsy surgery in children.

BackgroundRecurrent strokes are preventable through awareness and control of risk factors such as hypertension, and through lifestyle changes such as healthier diets, greater physical activity, and smoking cessation. However, vascular risk factor control is frequently poor among stroke survivors, particularly among socio-economically disadvantaged blacks, Latinos and other people of color. The Chronic Care Model (CCM) is an effective framework for multi-component interventions aimed at improving care processes and outcomes for individuals with chronic disease. In addition, community health workers (CHWs) have played an integral role in reducing health disparities; however, their effectiveness in reducing vascular risk among stroke survivors remains unknown. Our objectives are to develop, test, and assess the economic value of a CCM-based intervention using an Advanced Practice Clinician (APC)-CHW team to improve risk factor control after stroke in an under-resourced, racially/ethnically diverse population.Methods/designIn this single-blind randomized controlled trial, 516 adults (≥40years) with an ischemic stroke, transient ischemic attack or intracerebral hemorrhage within the prior 90days are being enrolled at five sites within the Los Angeles County safety-net setting and randomized 1:1 to intervention vs usual care. Participants are excluded if they do not speak English, Spanish, Cantonese, Mandarin, or Korean or if they are unable to consent. The intervention includes a minimum of three clinic visits in the healthcare setting, three home visits, and Chronic Disease Self-Management Program group workshops in community venues. The primary outcome is blood pressure (BP) control (systolic BP

The authors examined associations of various sleep-disturbance symptoms with health-related quality of life (HRQOL) in 153 adults with Parkinson's disease (PD). PD patients reported more snoring, sleep inadequacy, daytime somnolence, and sleep-maintenance problems than the general population. Symptoms having the broadest and strongest unique associations with generic HRQOL (eight scales; two composites of SF-36) were daytime somnolence (five scales; one composite), sleep initiation (eight scales; two composites), and awakening short of breath or with headache (six scales; two composites). Associations of selected sleep-disturbance symptoms--some unanticipated--suggest that assessing specific symptoms is worthwhile in clinical care.

Background: Beta versions of health information technology tools are needed in service delivery models with health care and community partnerships to confirm the key components and to assess the performance of the tools and their impact on users. We developed a care management technology (CMT) for use by community health workers (CHWs) and care managers (CMs) working collaboratively to improve risk factor control among recent stroke survivors. The CMT was expected to enhance the efficiency and effectiveness of the CHW-CM team. Objective: The primary objective was to describe the Secondary Stroke Prevention by Uniting Community and Chronic Care Model Teams Early to End Disparities (SUCCEED) CMT and investigate CM and CHW perceptions of the CMT’s usefulness and challenges for team-based care management. Methods: We conducted qualitative interviews with all users of the beta-version SUCCEED CMT, namely two CMs and three CHWs. They were asked to demonstrate and describe their perceptions of the CMT’s ease of use and usefulness for completing predefined key care management activities. They were also probed about their general perceptions of the CMT’s information quality, ease of use, usefulness, and impact on CM and CHW roles. Interview transcripts were coded using a priori codes. Coded excerpts were grouped into broader themes and then related in a conceptual model of how the CMT facilitated care management. We also conducted a survey with 14 patients to obtain their perspective on CHW tablet use during CHW-patient interactions. Results: Care managers and community health workers expressed that the CMT helped them keep track of patient interactions and plan their work. It guided CMs in developing and sharing care plans with CHWs. For CHWs, the CMT enabled electronic collection of clinical assessment data, provided decision support, and provided remote access to patients’ risk factor values. Long loading times and downtimes due to outages were the most significant challenges encountered. Additional issues included extensive use of free-text responses and manual data transfer from the electronic medical record. Despite these challenges, patients overall did not perceive the tablet as interfering with CHW-patient interactions. Conclusions: Our findings suggest useful functionalities of CMTs supporting health care and community partners in collaborative chronic care management. However, usability issues need to be addressed during the development process. The SUCCEED CMT is an initial step toward the development of effective health information technology tools to support collaborative, team-based models of care and will need to be modified as the evidence base grows. Future research should assess the CMT’s effects on team performance. [JMIR Res Protoc 2017;6(5):e94]

Objective Children with medically refractory epilepsy stand to benefit from surgery and live a life free of seizures. However, a large proportion of potentially eligible children do not receive a timely referral for a surgical evaluation. We aimed to describe experiences during the arduous time before the referral and the parent-reported facilitators that helped them move forward through this slow time. Methods Individual semi-structured interviews with 37 parents of children who had previously undergone epilepsy surgery at UCLA (2006–2011) were recorded, transcribed, and systematically analyzed by two independent coders using thematic analysis. Clinical data were extracted from medical records. Results Parents, 41.3 years of age on average, were mostly Caucasian, English-speaking, mothers, married, and employed. The mean age at surgery for children was 8.2 years with a mean time from epilepsy onset to surgery of 5.4 years. Parental decision-making was facilitated when parents eventually received a presurgical referral and navigated to a multidisciplinary team that they trusted to care for their child with medically refractory epilepsy. Four themes described the experiences that parents used to feel a sense of moving forward. The first theme, processing, involved working through feelings and was mostly done alone. The second theme, navigating the complex unknowns of the health-care system, was more active and purposeful. Processing co-occurred with navigating in a fluid intersection, the third theme, which was evidenced by deliberate actions. The fourth theme, facilitators, explained helpful ways of processing and navigating; parents utilized these mechanisms to turn vulnerable times following the distress of their child's diagnosis into an experience of productivity. Significance To limit parental distress and remediate the slow and arduous journey to multidisciplinary care at a comprehensive epilepsy center for a surgical evaluation, we suggest multi-pronged interventions to modify barriers associated with parents, providers, and health-care systems. Based on the facilitators that moved parents of our sample forward, we provide practical suggestions such as increased peer support, developing the role of patient navigators and communication strategies with parents before, during, and after referral to a comprehensive epilepsy center and presurgical evaluation.

BACKGROUND: Adults with childhood-onset epilepsy experience poorer adult social outcomes than their peers. The relative roles of seizures over time versus learning and psychiatric problems are unclear. METHODS: We examined independent influences of psychiatric and learning disorders and of seizure course in 241 young adults (22–35 years old) with uncomplicated epilepsy in a longitudinal community-based cohort study. Social outcomes were ascertained throughout the study. A history of psychiatric and learning problems was ascertained ∼9 years after study entry. Seizure course was: “Excellent,” no seizures after the first year, in complete remission at last contact (N = 95, 39%); “Good,” seizures occurred 1 to 5 years after diagnosis, in complete remission at last contact (N = 56, 23%); “Fluctuating,” more complicated trajectories, but never pharmacoresistant (N = 70, 29%); “Pharmacoresistant,” long-term pharmacoresistant (N = 20, 8%). Multiple logistic regression was used to identify contributors to each social outcome. RESULTS: Better seizure course predicted college completion, being either employed or pursuing a degree, and driving, but was not substantially associated with other social outcomes. Poorer seizure course was associated with a greater likelihood of having offspring, particularly in women without partners. Learning problems, psychiatric disorders, or both negatively influenced all but 2 of the social outcomes. CONCLUSIONS: In young adults with uncomplicated epilepsy, the course of seizures contributed primarily to education, employment, and driving. A history of learning problems and psychiatric disorders adversely influenced most adult outcomes. These findings identify potential reasons for vocational and social difficulties encountered by young adults with childhood epilepsy and areas to target for counseling and transition planning.

Health-related quality of life (HRQOL) is associated with seizure recency amongst adults with epilepsy. In a prospective, community-based study of long-term outcomes of childhood-onset epilepsy, we evaluated whether worse HRQOL is associated with more recent seizures amongst children and adolescents with epilepsy. We used the Child Health Questionnaire (CHQ), a generic measure with child and parent-proxy versions, to measure HRQOL. Amongst 277 children with epilepsy (CWE) assessed 9 years after diagnosis, parent-proxy reported but not child self-reported HRQOL was significantly worse for those having seizures in the prior year compared to those who were seizure-free ≥1 year across the majority of scales. There were no differences between CWE in remission for 1–5 years compared to ≥ 5 years for child and parent-proxy reported HRQOL with the exception of the parent emotional impact scale, thereby suggesting that HRQOL differences related to seizure recency level off after the initial year of remission.

Objective: Care management approaches have been proven to improve outcomes for patients with dementia and their family caregivers (dyads). However, acceptance of services in these programs is incomplete, impacting effectiveness. Acceptance may be related to dyad as well as healthcare system characteristics, but knowledge about factors associated with program acceptance is lacking. This study investigates patient, caregiver, and healthcare system characteristics associated with acceptance of offered care management services. Methods: This study analyzed data from the intervention arm of a cluster randomized controlled trial of a comprehensive dementia care management intervention. There were 408 patient–caregiver dyads enrolled in the study, of which 238 dyads were randomized to the intervention. Caregiver, patient, and health system factors associated with participation in offered care management services were assessed through bivariate and multivariate regression analyses. Results:Out of the 238 dyads, 9 were ineligible for this analysis, leaving data of 229 dyads in this sample. Of these, 185 dyads accepted offered care management services, and 44 dyads did not. Multivariate analyses showed that higher likelihood of acceptance of care management services was uniquely associated with cohabitation of caregiver and patient (p

We analyzed data from the 2002–2007 Medical Expenditure Panel Survey (MEPS) to assess whether individuals with epilepsy who are uninsured and those who have Medicaid coverage experience differences in medical resource utilization or out-of-pocket costs compared with those having other types of insurance. With sociodemographic characteristics controlled for, uninsured individuals had significantly fewer outpatient visits, fewer visits with neurologists, and greater antiepileptic drug costs than did those with private insurance. Individuals with Medicaid coverage had similar medical resource utilization rates but lower out-of-pocket costs compared with privately insured individuals. These findings indicate substantial barriers to receipt of appropriate medical care for uninsured individuals with epilepsy, but not for those with Medicaid coverage. Future studies should evaluate whether ongoing changes to the US health care system are able to address the differences in care we found among uninsured individuals with epilepsy and should incorporate measures of disease severity and unmet need.