The Challenge of Examining Social Determinants of Health in People Living With Tourette Syndrome.

BACKGROUND: To examine the association between race, ethnicity, and parental educational attainment on tic-related outcomes among Tourette Syndrome (TS) participants in the Tourette Association of America International Consortium for Genetics (TAAICG) database. METHODS: 723 participants in the TAAICG dataset aged ≤21 years were included. The relationships between tic-related outcomes and race and ethnicity were examined using linear and logistic regressions. Parametric and nonparametric tests were performed to examine the association between parental educational attainment and tic-related outcomes. RESULTS: Race and ethnicity were collapsed as non-Hispanic white (N=566, 88.0%) versus Other (N=77, 12.0%). Tic symptom onset was earlier by 1.1 years (P < 0.0001) and TS diagnosis age was earlier by 0.9 years (P = 0.0045) in the Other group (versus non-Hispanic white). Sex and parental education as covariates did not contribute to the differences observed in TS diagnosis age. There were no significant group differences observed across the tic-related outcomes in parental education variable. CONCLUSIONS: Our study was limited by the low number of nonwhite or Hispanic individuals in the cohort. Racial and ethnic minoritized groups experienced an earlier age of TS diagnosis than non-Hispanic white individuals. Tic severity did not differ between the two groups, and parental educational attainment did not affect tic-related outcomes. There remain significant disparities and gaps in knowledge regarding TS and associated comorbid conditions. Our study suggests the need for more proactive steps to engage individuals with tic disorders from all racial and ethnic minoritized groups to participate in research studies.

Teleneurology and Health Disparities.

The disparate access to, and use of, telemedicine reflects those of in-person health. These disparities are perpetuated as a result of individual, social, and structural factors like low digital literacy, unequal availability of broadband services, and systemic racism. This review focuses on extant literature on disparities in teleneurology, including racial or ethnic disparities, language inequities, and the global context. Understanding social and structural barriers to equitable access to quality teleneurology is critical to addressing and preventing health disparities, ensuring effective and equitable neurological care for all patients.

Telemedicine visits in myasthenia gravis: Expert guidance and the Myasthenia Gravis Core Exam (MG-CE).

INTRODUCTION/AIMS: Telemedicine may be particularly well-suited for myasthenia gravis (MG) due to the disorder's need for specialized care, its hallmark fluctuating muscle weakness, and the potential for increased risk of virus exposure among patients with MG during the coronavirus disease 2019 (COVID-19) pandemic during in-person clinical visits. A disease-specific telemedicine physical examination to reflect myasthenic weakness does not currently exist. METHODS: This paper outlines step-by-step guidance on the fundamentals of a telemedicine assessment for MG. The Myasthenia Gravis Core Exam (MG-CE) is introduced as a MG-specific, telemedicine, physical examination, which contains eight components (ptosis, diplopia, facial strength, bulbar strength, dysarthria, single breath count, arm strength, and sit to stand) and takes approximately 10 minutes to complete. RESULTS: Pre-visit preparation, remote ascertainment of patient-reported outcome scales and visit documentation are also addressed. DISCUSSION: Additional knowledge gaps in telemedicine specific to MG care are identified for future investigation.

Developing the Neurology Diversity Officer: A Roadmap for Academic Neurology Departments.

Academic Neurology Departments must confront the challenges of developing a diverse workforce, reducing inequity and discrimination within academia, and providing neurologic care for an increasingly diverse society. A neurology diversity officer should have a specific role and associated title within a neurology department as well as a mandate to focus their efforts on issues of equity, diversity and inclusion that affect staff, trainees and faculty. This role is expansive and works across departmental missions but it has many challenges related to structural intolerance and cultural gaps. In this review, we describe the many challenges that diversity officers face and how they might confront them. We delineate the role and duties of the neurology diversity officer and provide a guide to departmental leaders on how to assess qualifications and evaluate progress. Finally, we describe the elements necessary for success. A neurology diversity officer should have the financial, administrative and emotional support of leadership in order for them to carry out their mission and to truly have a positive influence.

Language preference does not influence stroke patients' symptom recognition or emergency care time metrics.

INTRODUCTION: Our objective was to determine whether acute ischemic stroke (AIS) patients' language preference is associated with differences in time from symptom discovery to hospital arrival, activation of emergency medical services, door-to-imaging time (DTI), and door-to-needle (DTN) time. METHODS: We identified consecutive AIS patients presenting to a single urban, tertiary, academic center between 01/2003-05/2014 for whom language preference was available. Data were abstracted from the institution's Research Patient Data Registry and Get with the Guidelines-Stroke Registry. Bivariate and regression models evaluated the relationship between language preference and: 1) time from symptom onset to hospital arrival, 2) use of EMS, 3) DTI, and 4) DTN time. RESULTS: Of 3190 AIS patients, 300 (9.4%) were non-English preferring (NEP). Comparing NEP to English preferring (EP) patients in unadjusted or adjusted analyses, time from symptom discovery to arrival and rate of EMS utilization were not significantly different (overall median time 157 min, IQR 55-420; EMS utilization: 65% vs. 61.3% p = 0.21). There was also no significant differences in DTI or in likelihood of guideline-recommended DTI ≤ 25 min (overall median 59 min, IQR 29-127; DTI ≤ 25 min 24.3% vs. 21.3% p = 0.29) or DTN time or in likelihood of guideline-recommended DTN ≤ 60 min (overall median 53 min, IQR 36-73; DTN ≤ 60 min 62.5% vs. 58.2% p = 0.60). CONCLUSION: Consistent with prior reports examining disparities in care, a systems-based approach to acute stroke prevents differences in hospital-based metrics. Reassuringly, NEP and EP patients also had similar speed of symptom recognition and EMS utilization.

Challenges and opportunities caring for neurology outpatients across language differences.

BACKGROUND: With over 66 million Americans who speak over 350 languages other than English at home, we sought to examine attitudes and behaviors of neurology clinicians and staff when communicating across language differences. METHODS: We conducted an electronic-enabled cross-sectional survey of clinicians and patient services coordinators working at an academic neurology outpatient clinic. Questions focused on professional medical interpreter (PMI) services usage, satisfaction, and perceived barriers to utilization. RESULTS: A total of 82/235 (35%) neurology clinicians and 24/52 (46%) coordinators met the study eligibility criteria. Most clinicians (96%) reported seeing at least 1 non-English-speaking patient and using PMI services (85%) in the last month. Most commonly self-reported interpretation modalities were face-to-face PMI services (39%) and patients' family members or friends (28%). Perceived barriers to using PMI included time constraints (60%) and lack of available face-to-face PMI (51%). Among patient services coordinators, 33% reported consistently asking patients their preferred language and 50% if they needed a PMI for appointments. Most respondents (77% clinicians and 71% coordinators) were satisfied with PMI services. Recommendations included having more available face-to-face PMI, greater coordinated efforts to preschedule PMI, and more education on the effective use of PMI. CONCLUSIONS: More than 70% of outpatient neurology clinicians and patient services coordinators were satisfied with PMI. However, their perceived barriers and reported practices suggest a need for updated policies and education to improve the use of PMI services.

Professional Medical Interpreters Influence the Quality of Acute Ischemic Stroke Care for Patients Who Speak Languages Other than English.

BACKGROUND: The inability to communicate effectively in a common language can jeopardize clinicians' efforts to provide quality patient care. Professional medical interpreters (PMIs) can help provide linguistically appropriate health care, in particular for the >25 million Americans who identify speaking English less than very well. We aimed to evaluate the relationship between use of PMIs and quality of acute ischemic stroke care received by patients who preferred to have their medical care in languages other than English. METHODS AND RESULTS: We analyzed data from 259 non-English-preferring acute ischemic stroke patients who participated in the American Heart Association Get With The Guidelines-Stroke program at our hospital from January 1, 2003, to April 30, 2014. We used descriptive statistics and logistic regression models to examine associations between involvement of PMIs and patients' receipt of defect-free stroke care. A total of 147 of 259 (57%) non-English-preferring patients received PMI services during their hospital stays. Multivariable analyses adjusting for other socioeconomic factors showed that acute ischemic stroke patients who did not receive PMIs had lower odds of receiving defect-free stroke care (odds ratio: 0.52; P=0.04). CONCLUSIONS: Our findings suggest that PMIs may influence the quality of acute ischemic stroke care.

National randomized controlled trial of virtual house calls for Parkinson disease.

OBJECTIVE: To determine whether providing remote neurologic care into the homes of people with Parkinson disease (PD) is feasible, beneficial, and valuable. METHODS: In a 1-year randomized controlled trial, we compared usual care to usual care supplemented by 4 virtual visits via video conferencing from a remote specialist into patients' homes. Primary outcome measures were feasibility, as measured by the proportion who completed at least one virtual visit and the proportion of virtual visits completed on time; and efficacy, as measured by the change in the Parkinson's Disease Questionnaire-39, a quality of life scale. Secondary outcomes included quality of care, caregiver burden, and time and travel savings. RESULTS: A total of 927 individuals indicated interest, 210 were enrolled, and 195 were randomized. Participants had recently seen a specialist (73%) and were largely college-educated (73%) and white (96%). Ninety-five (98% of the intervention group) completed at least one virtual visit, and 91% of 388 virtual visits were completed. Quality of life did not improve in those receiving virtual house calls (0.3 points worse on a 100-point scale; 95% confidence interval [CI] -2.0 to 2.7 points; p = 0.78) nor did quality of care or caregiver burden. Each virtual house call saved patients a median of 88 minutes (95% CI 70-120; p < 0.0001) and 38 miles per visit (95% CI 36-56; p < 0.0001). CONCLUSIONS: Providing remote neurologic care directly into the homes of people with PD was feasible and was neither more nor less efficacious than usual in-person care. Virtual house calls generated great interest and provided substantial convenience. CLINICALTRIALSGOV IDENTIFIER: NCT02038959. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that for patients with PD, virtual house calls from a neurologist are feasible and do not significantly change quality of life compared to in-person visits. The study is rated Class III because it was not possible to mask patients to visit type.

Phase IIa trial of fingolimod for amyotrophic lateral sclerosis demonstrates acceptable acute safety and tolerability.

INTRODUCTION: Immune activation has been implicated in progression of amytrophic lateral sclerosis (ALS). Oral fingolimod reduces circulating lymphocytes. The objective of this phase IIa, randomized, controlled trial was to test the short-term safety, tolerability, and target engagement of fingolimod in ALS. METHODS: Randomization was 2:1 (fingolimod:placebo). Treatment duration was 4 weeks. Primary outcomes were safety and tolerability. Secondary outcomes included circulating lymphocytes and whole-blood gene expression. RESULTS: Thirty participants were randomized; 28 were administered a drug (fingolimod 18, placebo 10). No serious adverse events occurred. Adverse events were similar by treatment arm, as was study discontinuation (2 fingolimod vs. 0 placebo, with no statistical difference). Forced expiratory volume in 1 second (FEV1 ) and FEV1 /slow vital capacity changes were similar in the fingolimod and placebo arms. Circulating lymphocytes decreased significantly in the fingolimod arm (P < 0.001). Nine immune-related genes were significantly downregulated in the fingolimod arm, including forkhead box P3 (P < 0.001) and CD40 ligand (P = 0.003). DISCUSSION: Fingolimod is safe and well-tolerated and can reduce circulating lymphocytes in ALS patients. Muscle Nerve 56: 1077-1084, 2017.

Racial disparities in neurologic health care access and utilization in the United States.

OBJECTIVE: To evaluate racial and ethnic differences in the utilization of neurologic care across a wide range of neurologic conditions in the United States. METHODS: We analyzed nationally representative data from the 2006-2013 Medical Expenditure Panel Survey (MEPS), including information on demographics, patient-reported health conditions, neurology visit rates, and costs. Using diagnostic codes, we identified persons with any self-identified neurologic disorder except back pain, as well as 5 subgroups (Parkinson disease, multiple sclerosis, headache, cerebrovascular disease, and epilepsy). To assess disparities in neurologic care utilization, we performed logistic regression analyses of outpatient department neurologic care visit rates and expenditures for each racial ethnic group controlling for age, sex, health status, socioeconomic characteristics, and geographic region of care. RESULTS: Of the 279,103 MEPS respondents, 16,936 (6%) self-reported a neurologic condition; 5,890 (2%) received a total of 13,685 outpatient neurology visits. Black participants were nearly 30% less likely to see an outpatient neurologist (odds ratio [OR] 0.72, confidence interval [CI] 0.64-0.81) relative to their white counterparts, even after adjustment for demographic, insurance, and health status differences. Hispanic participants were 40% less likely to see an outpatient neurologist (OR 0.61, CI 0.54-0.69). Among participants with known neurologic conditions, blacks were more likely to be cared for in the emergency department, to have more hospital stays, and to have higher per capita inpatient expenditures than their white counterparts. CONCLUSIONS: Our findings highlight racial and ethnic inequalities in the utilization of neurologic care in the United States.

Relationship Between Language Preference and Intravenous Thrombolysis Among Acute Ischemic Stroke Patients.

BACKGROUND: Approximately 20% of the US population primarily speaks a language other than English at home. Yet the effect of language preference on treatment of acute ischemic stroke (AIS) patients remains unknown. We aimed to evaluate the influence of language preference on AIS patients' receipt of intravenous (IV) thrombolysis. METHODS AND RESULTS: We analyzed data from 3894 AIS patients who participated in the American Heart Association "Get With The Guidelines®-Stroke" program at our hospital from January 1, 2003 to April 30, 2014. Information included patients' language in which they preferred to receive medical care. We used descriptive statistics and stepwise logistic regression models to examine associations between patients' language preference and receipt of IV thrombolysis, adjusting for relevant covariates. A total of 306/3295 (9.3%) AIS patients preferred to speak a non-English language and represented 25 different languages. Multivariable analyses adjusting for other socioeconomic factors showed that non-English-preferring patients were more likely than English-preferring patients to receive IV thrombolysis (OR=1.64; CI=1.09-2.48; P=0.02). However, in models that also included age, sex, and initial NIH Stroke Scale, patients' language preference was no longer significant (OR 1.38; CI=0.88-2.15; P=0.16), but NIH Stroke Scale was strongly associated with receiving IV thrombolysis (OR=1.15 per point; CI=1.13-1.16; P<0.0001). CONCLUSIONS: Contrary to our hypothesis, non-English-preferring was not associated with lower rates of IV thrombolysis among AIS patients once initial stroke severity was accounted for.

National Randomized Controlled Trial of Virtual House Calls for People with Parkinson's Disease: Interest and Barriers.

BACKGROUND: Delivering specialty care remotely directly into people's homes can enhance access for and improve the healthcare of individuals with chronic conditions. However, evidence supporting this approach is limited. MATERIALS AND METHODS: Connect.Parkinson is a randomized comparative effectiveness study that compares usual care of individuals with Parkinson's disease in the community with usual care augmented by virtual house calls with a Parkinson's disease specialist from 1 of 18 centers nationally. Individuals in the intervention arm receive four virtual visits from a Parkinson's disease specialist over 1 year via secure, Web-based videoconferencing directly into their homes. All study activities, including recruitment, enrollment, and assessments, are conducted remotely. Here we report on interest, feasibility, and barriers to enrollment in this ongoing study. RESULTS: During recruitment, 11,734 individuals visited the study's Web site, and 927 unique individuals submitted electronic interest forms. Two hundred ten individuals from 18 states enrolled in the study from March 2014 to June 2015, and 195 were randomized. Most participants were white (96%) and college educated (73%). Of the randomized participants, 73% had seen a Parkinson's disease specialist within the previous year. CONCLUSIONS: Among individuals with Parkinson's disease, national interest in receiving remote specialty care directly into the home is high. Remote enrollment in this care model is feasible but is likely affected by differential access to the Internet.

Association between α-synuclein blood transcripts and early, neuroimaging-supported Parkinson's disease.

There are no cures for neurodegenerative diseases and this is partially due to the difficulty of monitoring pathogenic molecules in patients during life. The Parkinson's disease gene α-synuclein (SNCA) is selectively expressed in blood cells and neurons. Here we show that SNCA transcripts in circulating blood cells are paradoxically reduced in early stage, untreated and dopamine transporter neuroimaging-supported Parkinson's disease in three independent regional, national, and international populations representing 500 cases and 363 controls and on three analogue and digital platforms with P < 0.0001 in meta-analysis. Individuals with SNCA transcripts in the lowest quartile of counts had an odds ratio for Parkinson's disease of 2.45 compared to individuals in the highest quartile. Disease-relevant transcript isoforms were low even near disease onset. Importantly, low SNCA transcript abundance predicted cognitive decline in patients with Parkinson's disease during up to 5 years of longitudinal follow-up. This study reveals a consistent association of reduced SNCA transcripts in accessible peripheral blood and early-stage Parkinson's disease in 863 participants and suggests a clinical role as potential predictor of cognitive decline. Moreover, the three independent biobank cohorts provide a generally useful platform for rapidly validating any biological marker of this common disease.

The disability burden associated with stroke emerges before stroke onset and differentially affects blacks: results from the health and retirement study cohort.

BACKGROUND: Few longitudinal studies compare changes in instrumental activities of daily living (IADLs) among stroke-free adults to prospectively document IADL changes among adults who experience stroke. We contrast annual declines in IADL independence for older individuals who remain stroke free to those for individuals who experienced stroke. We also assess whether these patterns differ by sex, race, or Southern birthplace. METHODS: Health and Retirement Study participants who were stroke free in 1998 (n = 17,741) were followed through 2010 (average follow-up = 8.9 years) for self- or proxy-reported stroke. We used logistic regressions to compare annual changes in odds of self-reported independence in six IADLs among those who remained stroke free throughout follow-up (n = 15,888), those who survived a stroke (n = 1,412), and those who had a stroke and did not survive to participate in another interview (n = 442). We present models adjusted for demographic and socioeconomic covariates and also stratified on sex, race, and Southern birthplace. RESULTS: Compared with similar cohort members who remained stroke free, participants who developed stroke had faster declines in IADL independence and lower probability of IADL independence prior to stroke. After stroke, independence declined at an annual rate similar to those who did not have stroke. The black-white disparity in IADL independence narrowed poststroke. CONCLUSION: Racial differences in IADL independence are apparent long before stroke onset. Poststroke differences in IADL independence largely reflect prestroke disparities.

Tardive dyskinesia and withdrawal emergent syndrome in children.

Tardive dyskinesia (TD) is a well-recognized and sometimes permanent adverse effect of treatment with dopamine receptor-blocking drugs (DRBDs), also referred to as neuroleptics. This iatrogenic disorder has been well characterized in adults, but not extensively studied in children. Withdrawal emergent syndrome (WES) is another pediatric movement disorder related to the use of DRBDs. TD and WES are among the most feared adverse effects of DRBD treatment, and have important medical and legal implications. We review published studies of children under the age of 18 years who were exposed to DRBD to determine the clinical spectrum and estimate the possible prevalence of TD and WES. We particularly wish to draw attention to the phenomenology, clinical course and treatment of these childhood-onset disorders. Although avoiding DRBDs is the best strategy for minimizing the risk of TD and WES, physicians who evaluate children exposed to DRBDs must be vigilant and recognize the early symptoms and signs of these syndromes to provide appropriate clinical management.