Survey of medication usage patterns among essential tremor patients: Movement disorder specialists vs. general neurologists

doi:10.1016/j.parkreldis.2010.07.011

Parkinsonism & Related Disorders

Volume 16, Issue 9, November 2010, Pages 604-607

https://doi.org/10.1016/j.parkreldis.2010.07.011 Get rights and content

Abstract

Background

Although small treatment trials have examined the efficacy of front-line medications in tremor reduction in essential tremor (ET), an overall survey of pharmacological management has not been undertaken in a large sample of ET cases.

Objectives

To conduct a survey of medication usage among several hundred ET patients.

Methods

A computerized database at the Neurological Institute of New York was used to identify 223 ET patients cared for by movement disorder neurologists and 37 cared for by general neurologists. Each had been seen one or more times within past five years. Lifetime treatment data were abstracted from clinical records.

Results

One-hundred-sixty-three (73.1%) of 223 patients cared for by movement disorder neurologists had taken medication for ET during their lifetime; 53/163 (32.5%) had taken ≥4 medications; 31/163 (19.0%) had taken ≥5 medications; and 3 (1.8%), ≥10 medications. Nearly three-quarters (158/223 [70.9%]) had taken primidone or propranolol, yet 89/158 (56.3%) had discontinued both. Among 11 patients who had undergone ET surgery, the mean number of ET medications tried was 6.0 ± 2.8 (range = 3-12). Medication usage by general neurologists was less than by movement disorder specialists (p < 0.001). One-third of general neurologists’ patients (14/37 [37.8%]) had taken primidone or propranolol at some point and 6/14 (42.9%) had discontinued both.

Conclusions

In this large survey, a substantial proportion of ET patients failed treatment with both front-line medications. Among patients seeing movement disorder specialists, the number of medications they had had to try was sizable. These data demonstrate the limitations of current pharmacological options for ET.

Introduction

Essential tremor (ET) is one of the most commonly-encountered movement disorders [1], [2], yet pharmacotherapeutic options are limited [3], [4]. There are only two front-line medications, propranolol and primidone. There is an anecdotal impression that only 50% of patients benefit from medications, although large surveys have not provided detailed treatment response data [5]. Aside from poor efficacy, bothersome side effects limit medication usage. Although small treatment trials (number of subjects = 11–22)[6], [7], [8], [9] have examined the efficacy of front-line medications during the brief clinical trial period, a more general appraisal of pharmacological management has not been undertaken. Interestingly, there has been no larger-scale survey of basic medication usage patterns in ET patients. What proportion of ET patients is treated with any medication? What proportion, with >1 medication? What is the average number of medications tried? What percentage has used a front-line medication at some point? What proportion has discontinued medication? To what extent does poor efficacy vs. intolerable side effects underlie these decisions? To address these questions, we reviewed the clinical experience of several hundred patients followed at our treatment center in New York. Two groups of patients, those followed by general neurologists and those followed by movement disorder neurologists, provided complementary data on treatment patterns.

Section snippets

Methods

The computerized billing database at the Neurological Institute of New York (NI), Columbia University Medical Center, was used to identify patients with the International Disease Classification (ICD)-9 diagnostic code 333.1 (essential and other specified forms of tremor). The search was open to both the Center for Parkinson’s Disease and Other Movement Disorders and the Division of General Neurology and was limited to patients seen ≥1 times within past five years by any of eight physicians.

Results

There were 260 ET patients; 37 (14.2%) were followed by general neurologists and 223 (85.8%), by movement disorder neurologists at our center (Table 1).

Discussion

We examined basic medication usage patterns across a large group of ET patients followed at our center. Patients cared for by general neurologists and those cared for by movement disorder neurologists provided contrasting data on treatment patterns. Among the latter, approximately three-quarters had taken at least one medication for ET and nearly one-third of these had had to test ≥4 medications in their attempt to obtain relief. For the patients who eventually underwent ET surgery, the mean

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Updates in essential tremor
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Essential tremor (ET) is one of the most common tremor disorders and can be disabling in its affect on daily activities. There have been major breakthroughs in the treatment of tremor and ET is the subject of important ongoing research. This review will present recent advancements in the epidemiology, genetics, pathophysiology, diagnosis, comorbidities, and imaging of ET. Current and future treatment options in the management of ET will also be reviewed. The need for continued innovation and scientific inquiry to address the unmet needs of persons of ET will be highlighted.
Prospective, longitudinal analysis of medication use in a cohort of elderly essential tremor cases
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Despite the fact that pharmacotherapy is the mainstay of ET treatment, studies of medication usage patterns among ET patients are surprisingly scarce [2,9]. What little data are present, suggest that ET patients frequently change course in their medication regimen [2,9]. For example, in a retrospective review of 223 ET cases followed at a treatment center, two-thirds of the 55% who reported using primidone also noted that they had discontinued its use [9].
There are no prospective, longitudinal studies investigating patterns of medication use among essential tremor (ET) patients. Our goal was to fill this knowledge gap. We also had a unique opportunity to examine medication use patterns primarily among elders with longstanding ET. We hypothesized that by the time ET patients reach advanced ages, medication changes would be uncommon – that is, they may have reached some kind of equipoise.
A prospective, longitudinal cohort of ET cases was evaluated across three time points. Cases were not ascertained from a treatment setting, thereby removing important selection biases. Each reported current medications and dosages of each.
There were 144 cases (mean baseline age = 76.1 ± 9.4 years). The mean observation period = 2.9 ± 0.2 years. Primidone and propranolol were the most commonly used medications, although almost one-half of cases (44.4%) reported using neither during this period. A third of primidone users (33.3%) and a quarter of propranolol users (24.6%) reported changes in use vs. nonuse during the observation period. The majority of our cases made some change in their daily medication dosage during the course of the study - 73.3% of primidone users and 57.9% of propranolol users.
In this prospective, longitudinal study, use vs. nonuse and daily dosage of both primidone and propranolol fluctuated across time for a sizable proportion of ET cases. Even among elders with chronic, longstanding ET, there is considerable ongoing medication adjustment, underscoring the need to improve the medication situation for ET patients.
Annual health care costs among Medicare Beneficiaries with essential tremor
2022, Parkinsonism and Related Disorders
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The GLM addresses the skewed cost distribution, avoids transformation/re-transformation biases, and allows us to produce doubly robust estimates. We approximated the annual, population-level costs of prescription medications by multiplying percentage of ET patients using the most common medications [6] times the average annual cost [14]. Finally, we aggregated our direct medical and prescription medication costs for ET patients to the population level using a lower and upper bound estimate of the number of Medicare beneficiaries with ET.
Essential tremor (ET) is one of the most common neurological disorders, affecting an estimated 2.2% of the entire US population. Despite its high prevalence and associated morbidity and mortality, there are no published data on the medical costs associated with ET care.
This is a retrospective secondary data analysis using the 5% Medicare claims data from 2016 to study age-eligible Medicare beneficiaries diagnosed with ET (diagnostic code G250) relative to a propensity score-matched group of comparison beneficiaries without ET (27,081 in each arm). Comparisons were matched within age strata and on the full set of Charlson comorbidity indicators, race, and sex. We examined encounter-level costs (amounts paid) and total annual costs of care (in constant $2021 dollars) adjusting for age, sex, race/ethnicity, provider specialty, setting, and the most common comorbidities, using a generalized linear model.
The final sample included 54,162 total beneficiaries, with an average age of 75, 65% female and 94% Non-Hispanic White. On average, Medicare beneficiaries with at least one outpatient or physician office visit with an ET diagnosis have $1068 (95% CI: $981, $1154) in additional direct medical care expenditures per year relative to statistically similar comparison beneficiaries of the same age. Across the population, we predicted aggregated additional spending attributable to ET among Medicare beneficiaries between $1.5 billion and $5.4 billion per year.
The estimated direct medical costs among Medicare beneficiaries with an ET diagnosis aggregated to the population-level are non-trivial. These data begin to fill a gap in knowledge.
Noninvasive Thalamotomy for Refractory Tremor by Frameless Radiosurgery
2022, International Journal of Radiation Oncology Biology Physics
Citation Excerpt :
Efficacy of first-line medical therapy is limited. Medications can reduce symptoms by up to 60% in more than 50% of patients with ET, although many patients experience intolerable side effects; likewise, PD tremor is frequently medically refractory.4-6 Second-line treatment includes targeting of the thalamic ventral intermediate nucleus with surgical thalamotomy or deep brain stimulation (DBS).7
We sought to determine whether a more widely accessible, noninvasive, frameless approach to radiosurgical thalamotomy would improve objective measures of refractory essential or parkinsonian tremor without added toxicity compared with reports of frame-based radiosurgery.
We conducted a single-arm pilot observational prospective trial of adult patients with essential or parkinsonian tremor from 2013 to 2019 and report results at 1-year follow-up. Patients were treated with frameless unilateral radiosurgical ablation of the thalamic ventral intermediate nucleus to a maximum dose of 160 Gy. Treatment response was measured by the Fahn-Tolosa-Marin (FTM) tremor rating scale and the Quality of Life in Essential Tremor or Parkinson's Disease Questionnaire obtained before treatment and at 3, 6, 9, and 12 months.
Thirty-three patients, including 23 with essential tremor and 10 with Parkinson's disease, were enrolled. Overall treatment response rate per FTM was 83% (15 of 18) at 6 months. There was a marked improvement in tremor, with an average total FTM reduction of 21% at 3 months (from 46 to 30 points; P = .003) and 41% at 6 months (from 46 to 24 points; P = .001). At 6 months, functional decline had regressed by 54% (from 15 to 7 points; P = .001). Quality of life improved by 57% (P = .001) at 6 months in patients with essential tremor, and patients with Parkinson's disease had unchanged quality of life. At 1-year follow-up, grade 2 neurologic adverse events were observed in 6% (2 of 33) of patients without any grade ≥ 3 events.
Noninvasive, frameless radiosurgical thalamotomy may be a feasible treatment for patients with refractory tremor and demonstrates short-term safety at 1-year follow-up. This pilot study provides promising preliminary descriptions of efficacy, and definitive estimates of long-term safety and benefit require further study with longer follow-up.
Connectomic DBS in Parkinson’s disease, essential tremor and dystonia
2021, Connectomic Deep Brain Stimulation
The outcome of deep brain stimulation (DBS) surgery for Parkinson’s disease (PD), essential tremor (ET) and dystonia relies heavily on the accuracy of stereotactic targeting as well as on good patient selection. Although some surgical targets are readily identifiable on conventional magnetic resonance imaging (MRI) sequences, implantation in others relies on atlas-based approaches without fully accounting for interindividual variability. Moreover, brain target regions have functional “subzones” indiscernible on structural MRI alone. Computational neuroimaging techniques have been utilized to better identify these targets and their functional subregions based on patterns of connectivity. We reflect on the role of advanced MRI connectivity in improving targeting, patient selection, and outcome prediction in DBS for PD, ET, and dystonia. Connectomic DBS represents an exciting path for exploring novel biomarkers in the diagnosis and treatment of movement disorders. We present an overview of recent advances in this field and look into promising developments in machine learning.
Exploring essential tremor: Results from a large online survey
2021, Clinical Parkinsonism and Related Disorders
Essential tremor (ET) is one of the most common movement disorders; however, many patients are misdiagnosed and do not receive effective treatment. It is important to better understand the diagnosis, symptoms and treatment patterns to improve care for those with ET.
Persons in the International Essential Tremor Foundation database were invited to complete an online survey, focusing on symptoms, diagnosis, and treatment of ET.
The survey was emailed to 19,206 persons, with 2864 (14.9%) respondents. Mean age was 65.4 years, median age of tremor onset was 36–40 years, 61% were women, and 64% had a known family history of tremor. Forty-five percent saw multiple physicians before a diagnosis of ET with 65% being diagnosed by a neurologist. Current care is provided by a neurologist in 42%, a family physician in 26% and 28% do not see a physician for ET. Tremor was most commonly reported in the hands/arms (95%). The most commonly affected daily activities included writing, eating, drinking and carrying. Beta-blockers were the most commonly used treatment (42%); however, 33% had no benefit and 35% discontinued due to side effects. Of note, 33% had never received treatment for their tremor.
This survey highlights the need for more effective treatments with greater tolerability. Increased awareness among physicians and patients in the diagnosis and treatment of ET is also warranted, with nearly half the respondents seeing multiple physicians before receiving an ET diagnosis and nearly 30% not seeing a physician and/or not receiving treatment for ET.

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^☆: The review of this paper was entirely handled by an Associate Editor, Robert Rodnitzky.

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Short communicationSurvey of medication usage patterns among essential tremor patients: Movement disorder specialists vs. general neurologists☆

Abstract

Background

Objectives

Methods

Results

Conclusions

Introduction

Section snippets

Methods

Results

Discussion

Lancet

Prevalance of essential tremor: door-to-door neurologic exams in Mersin Province, Turkey

Neurology

Prevalence of essential tremor in elderly populations of Spain

Mov Disord

Practice parameter: therapies for essential tremor: report of the quality standards subcommittee of the American academy of neurology

Neurology

The relationship of essential tremor to other movement disorders: report on 678 patients

Ann Neurol

Efficacy of primidone in essential tremor

Neurology

Short communication
Survey of medication usage patterns among essential tremor patients: Movement disorder specialists vs. general neurologists☆