Family meetings are fundamental to the practice of palliative medicine and serve as a cornerstone of intervention on the inpatient palliative care consultation service. The COVID-19 pandemic ...disrupted the structure and process of in-patient family meetings, owing to necessary but restrictive visitor policies that did not allow families to be present in the hospital. We describe implementation of telemedicine to facilitate electronic family (e-family) meetings to facilitate in-patient palliative care. Of 67 scheduled meetings performed by the palliative care service, only two meetings were aborted for a 97% success rate of scheduled meetings occurring. On a five-point Likert-type scale, the average clinician rating of the e-family meeting overall quality was 3.18 (SD, .96). Of the 10 unique family participants who agreed to be interviewed, their overall ratings of the e-family meetings were high. Over 80% of respondent families participants reported that they agreed or strongly agreed that they were able to ask all of their questions, felt comfortable expressing their thoughts and feelings with the clinical team, felt like they understood the care their loved one received, and that the virtual family meeting helped them trust the clinical team. Of patients who were able to communicate, 50% of family respondents reported that the e-family meeting helped them understand their loved one's thoughts and wishes.
To describe geographic variation in neurologist density, neurologic conditions, and neurologist involvement in neurologic care.
We used 20% 2015 Medicare data to summarize variation by Hospital ...Referral Region (HRR). Neurologic care was defined as office-based evaluation/management visits with a primary diagnosis of a neurologic condition.
Mean density of neurologists varied nearly 4-fold from the lowest to the highest density quintile (9.7 95% confidence interval (CI) 9.2-10.2 vs 43.1 95% CI 37.6-48.5 per 100,000 Medicare beneficiaries). The mean prevalence of patients with neurologic conditions did not substantially differ across neurologist density quintile regions (293 vs 311 per 1,000 beneficiaries in the lowest vs highest quintiles, respectively). Of patients with a neurologic condition, 23.5% were seen by a neurologist, ranging from 20.6% in the lowest quintile regions to 27.0% in the highest quintile regions (6.4% absolute difference). Most of the difference comprised dementia, pain, and stroke conditions seen by neurologists. In contrast, very little of the difference comprised Parkinson disease and multiple sclerosis, both of which had a very high proportion (>80%) of neurologist involvement even in the lowest quintile regions.
The supply of neurologists varies substantially by region, but the prevalence of neurologic conditions does not. As neurologist supply increases, access to neurologist care for certain neurologic conditions (dementia, pain, and stroke) increases much more than for others (Parkinson disease and multiple sclerosis). These data provide insight for policy makers when considering strategies in matching the demand for neurologic care with the appropriate supply of neurologists.
Following the outbreak of viral infections from the severe acute respiratory syndrome coronavirus 2 virus in 2019 (coronavirus disease 2019 COVID-19), reports emerged of long-term neurologic sequelae ...in survivors. To better understand the burden of neurologic health care and incident neurologic diagnoses in the year after COVID-19 vs influenza, we performed an analysis of patient-level data from a large collection of electronic health records (EMR).
We acquired deidentified data from TriNetX, a global health research network providing access to EMR data. We included individuals aged 18 years or older during index event, defined as hospital-based care for COVID-19 (from April 1, 2020, until November 15, 2021) or influenza (from 2016 to 2019). The study outcomes were subsequent health care encounters over the following year for 6 neurologic diagnoses including migraine, epilepsy, stroke, neuropathy, movement disorders, and dementia. We also created a composite of the 6 diagnoses as an incident event, which we call "incident neurologic diagnoses." We performed a 1:1 complete case nearest-neighbor propensity score match on age, sex, race/ethnicity, marital status, US census region patient residence, preindex years of available data, and Elixhauser comorbidity score. We fit time-to-event models and reported hazard ratios for COVID-19 vs influenza infection.
After propensity score matching, we had a balanced cohort of 77,272 individuals with COVID-19 and 77,272 individuals with influenza. The mean age was 51.0 ± 19.7 years, 57.7% were female, and 41.5% were White. Compared with patients with influenza, patients with COVID-19 had a lower risk of subsequent care for migraine (HR 0.645, 95% CI 0.604-0.687), epilepsy (HR 0.783, 95% CI 0.727-0.843), neuropathies (HR 0.567, 95% CI 0.532-0.604), movement disorders (HR 0.644, 95% CI 0.598-0.693), stroke (HR 0.904, 95% CI 0.845-0.967), or dementia (HR 0.931, 95% CI 0.870-0.996). Postinfection incident neurologic diagnoses were observed in 2.79% of the COVID-19 cohort vs 4.91% of the influenza cohort (HR 0.618, 95% CI 0.582-0.657).
Compared with a matched cohort of adults with a hospitalization or emergency department visit for influenza infection, those with COVID-19 had significantly fewer health care encounters for 6 major neurologic diagnoses over a year of follow-up. Furthermore, we found that COVID-19 infection was associated with a lower risk of an incident neurologic diagnosis in the year after infection.
Purpose
Hypothalamic–pituitary (HP) neurosarcoidosis (NS) accounts for 0.5 % cases of sarcoidosis and 1 % of HP masses. Correlative data on endocrine and neurological outcomes is lacking.
Methods
...Retrospective case series and literature review of presentation, treatment and outcome of HP NS.
Results
Our series includes 4 men, ages 34–59, followed for a median of 7.3 years (range 1.5–17). All had optic neuropathy, multiple pituitary hormone abnormalities (PHAs) and other organ involvement by sarcoidosis (lung, sino-nasal, brain/spine and facial nerve). Two patients had central diabetes insipidus and one impaired thirst with polydipsia. After treatment with high-dose glucocorticoids, optic neuropathy improved in one case and stabilized in the others. After treatment, HP lesions improved radiologically, but PHAs persisted in all cases. Review of four published series on HP NS in addition to ours yielded 46 patients, age 37 ± 11.8 years, 65 % male. PHAs consisted of anterior hypopituitarism (LH/FSH 88.8 %, TSH 67.4 %, GH 50.0 %, ACTH 48.8 %), hyperprolactinemia (48.8 %) and diabetes insipidus (65.2 %). PHAs were the first sign of disease in 54.3 % patients. Vision problems occurred in 28.3 % patients, but optic neuropathy was not well documented in previous series. Most patients (93.5 %) received high-dose glucocorticoids followed by taper; 50 % also received other immunomodulators, including methotrexate, mycophenolate mofetil, cyclosporine, azathioprine, infliximab and hydrochloroquine. Only 13 % patients showed improvement in PHAs. All-cause mortality was 8.7 %.
Conclusion
HP NS is a serious disease requiring multidisciplinary treatment and lifelong follow-up. Prospective multicentric studies are needed to determine a more standardized approach to HP NS and outline predictors of disease outcome.
The objective of this study was to compare the utilization and costs (total and out-of-pocket) of new-to-market neurologic medications with existing guideline-supported neurologic medications over ...time.
We used a healthcare pharmaceutical claims database (from 2001 to 2019) to identify patients with both a diagnosis of 1 of 11 separate neurologic conditions and either a new-to-market medication or an existing guideline-supported medication for that condition. Neurologic conditions included orthostatic hypotension, spinal muscular atrophy, Duchenne disease, Parkinson disease, multiple sclerosis, amyotrophic lateral sclerosis, myasthenia gravis, Huntington disease, tardive dyskinesia, transthyretin amyloidosis, and migraine. New-to-market medications were defined as all neurologic medications approved by the US Food and Drug Administration (FDA) between 2014 and 2018. In each year, we determined the median out-of-pocket and standardized total costs for a 30-day supply of each medication. We also measured the proportion of patients receiving new-to-market medications compared with all medications specific for the relevant condition.
We found that the utilization of most new-to-market medications was small (<20% in all but 1 condition), compared with existing, guideline-supported medications. The out-of-pocket and standardized total costs were substantially larger for new-to-market medications. The median (25th percentile, 75th percentile) out-of-pocket costs for a 30-day supply in 2019 were largest for edaravone ($712.8 $59.8-$802.0) and eculizumab ($91.1 $3.0-$3,216.4). For new-to-market medications, the distribution of out-of-pocket costs was highly variable and the trends over time were unpredictable compared with existing guideline-supported medications.
Despite the increasing number of FDA-approved neurologic medications, utilization of newly approved medications in the privately insured population remains small. Given the high costs and similar efficacy for most of the new medications, limited utilization may be appropriate. However, for new medications with greater efficacy, future studies are needed to determine whether high costs are a barrier to utilization.
OBJECTIVETo determine out-of-pocket costs for neurologic medications in 5 common neurologic diseases.
METHODSUtilizing a large, privately insured, health care claims database from 2004 to 2016, we ...captured out-of-pocket medication costs for patients seen by outpatient neurologists with multiple sclerosis (MS), peripheral neuropathy, epilepsy, dementia, and Parkinson disease (PD). We compared out-of-pocket costs for those in high-deductible health plans compared to traditional plans and explored cumulative out-of-pocket costs over the first 2 years after diagnosis across conditions with high- (MS) and low/medium-cost (epilepsy) medications.
RESULTSThe population consisted of 105,355 patients with MS, 314,530 with peripheral neuropathy, 281,073 with epilepsy, 120,720 with dementia, and 90,801 with PD. MS medications had the fastest rise in monthly out-of-pocket expenses (mean SD $15 $23 in 2004, $309 $593 in 2016) with minimal differences between medications. Out-of-pocket costs for brand name medications in the other conditions also rose considerably. Patients in high-deductible health plans incurred approximately twice the monthly out-of-pocket expense as compared to those not in these plans ($661 $964 vs $246 $472 in MS, $40 $94 vs $18 $46 in epilepsy in 2016). Cumulative 2-year out-of-pocket costs rose almost linearly over time in MS ($2,238 $3,342) and epilepsy ($230 $443).
CONCLUSIONSOut-of-pocket costs for neurologic medications have increased considerably over the last 12 years, particularly for those in high-deductible health plans. Out-of-pocket costs vary widely both across and within conditions. To minimize patient financial burden, neurologists require access to precise cost information when making treatment decisions.
OBJECTIVETo determine the association between out-of-pocket costs and medication adherence in 3 common neurologic diseases.
METHODSUtilizing privately insured claims from 2001 to 2016, we identified ...patients with incident neuropathy, dementia, or Parkinson disease (PD). We selected patients who were prescribed medications with similar efficacy and tolerability, but differential out-of-pocket costs (neuropathy with gabapentinoids or mixed serotonin/norepinephrine reuptake inhibitors SNRIs, dementia with cholinesterase inhibitors, PD with dopamine agonists). Medication adherence was defined as the number of days supplied in the first 6 months. Instrumental variable analysis was used to estimate the association of out-of-pocket costs and other patient factors on medication adherence.
RESULTSWe identified 52,249 patients with neuropathy on gabapentinoids, 5,246 patients with neuropathy on SNRIs, 19,820 patients with dementia on cholinesterase inhibitors, and 3,130 patients with PD on dopamine agonists. Increasing out-of-pocket costs by $50 was associated with significantly lower medication adherence for patients with neuropathy on gabapentinoids (adjusted incidence rate ratio IRR 0.91, 0.89–0.93) and dementia (adjusted IRR 0.88, 0.86–0.91). Increased out-of-pocket costs for patients with neuropathy on SNRIs (adjusted IRR 0.97, 0.88–1.08) and patients with PD (adjusted IRR 0.90, 0.81–1.00) were not significantly associated with medication adherence. Minority populations had lower adherence with gabapentinoids and cholinesterase inhibitors compared to white patients.
CONCLUSIONSHigher out-of-pocket costs were associated with lower medication adherence in 3 common neurologic conditions. When prescribing medications, physicians should consider these costs in order to increase adherence, especially as out-of-pocket costs continue to rise. Racial/ethnic disparities were also observed; therefore, minority populations should receive additional focus in future intervention efforts to improve adherence.
To determine whether there was an increase in payments for neurologist-prescribed drugs, we performed a retrospective analysis of prescription claims in the Medicare Part D Prescriber Public Use ...Files from 2013 to 2017.
We included claims prescribed by providers with the taxonomy "neurology" and included drugs present in all 5 years. Drugs were designated in 2013 as generic (GEN), brand name only (BNO), and brand name prescribed even though a generic equivalent is available (BNGE). To observe payment trends, the percentage change in the per claim payment was compared between drug classes.
We included 520 drugs, of which 322 were GEN, 61 were BNO, and 137 were BNGE, representing 90,716,536 claims and generating payments of $26,654,750,720. While the number of claims from 2013 to 2017 increased only 7.6%, the total payment increased 50.4%. Adjusted for inflation, claim payments for GEN drug increased 0.6%, compared to significant increases in BNO and BNGE drugs of 42.4% and 45.0% (
< 0.001). The percentage of overall GEN claims increased from 81.9% to 88.0%, BNO increased from 4.9% to 6.2%, and BNGE decreased from 13.3% to 5.8%. Neuroimmunology/multiple sclerosis drugs represented >50% of the total payments despite being only 4.3% of claims.
Payments for neurologist-prescribed brand name, but not generic, drugs in Medicare Part D increased consistently and well above inflation from 2013 to 2017. Unless the overall trend stabilizes or is reversed or high cost-to-claim drugs are addressed, this trend will place an increasing burden on the neurologic Medicare budget.
The density of neurologists within a given geographic region varies greatly across the United States. We aimed to measure patient travel distance and travel time to neurologist visits, across ...neurologic conditions and subspecialties. Our secondary goal was to identify factors associated with long-distance travel for neurologic care.
We performed a cross-sectional analysis using a 2018 Medicare sample of patients with at least 1 outpatient neurologist visit.
was defined as driving distance ≥50 miles 1-way to the visit.
was measured as driving time in minutes. Multilevel generalized linear mixed models with logistic link function, which accounted for clustering of patients within hospital referral region and allowed modeling of region-specific random effects, were used to determine the association of patient and regional characteristics with long-distance travel.
We identified 563,216 Medicare beneficiaries with a neurologist visit in 2018. Of them, 96,213 (17%) traveled long distance for care. The median driving distance and time were 81.3 (interquartile range IQR: 59.9-144.2) miles and 90 (IQR: 69-149) minutes for patients with long-distance travel compared with 13.2 (IQR: 6.5-23) miles and 22 (IQR: 14-33) minutes for patients without long-distance travel. Comparing across neurologic conditions, long-distance travel was most common for nervous system cancer care (39.6%), amyotrophic lateral sclerosis ALS (32.1%), and MS (22.8%). Many factors were associated with long-distance travel, most notably low neurologist density (first quintile: OR 3.04 95% CI 2.41-3.83 vs fifth quintile), rural setting (4.89 4.79-4.99), long-distance travel to primary care physician visit (3.6 3.51-3.69), and visits for ALS and nervous system cancer care (3.41 3.14-3.69 and 5.27 4.72-5.89, respectively). Nearly one-third of patients bypassed the nearest neurologist by 20+ miles, and 7.3% of patients crossed state lines for neurologist care.
We found that nearly 1 in 5 Medicare beneficiaries who saw a neurologist traveled ≥50 miles 1-way for care, and travel burden was most common for lower-prevalence neurologic conditions that required coordinated multidisciplinary care. Important potentially addressable predictors of long-distance travel were low neurologist density and rural location, suggesting interventions to improve access to care such as telemedicine or neurologic subspecialist support to local neurologists. Future work should evaluate differences in clinical outcomes between patients with long-distance travel and those without.
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