Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting

Abstract

Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care. Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International Essential Tremor Foundation. The questionnaires were completed online and data were available in electronic format. Results: There were 1,418 respondents. One in three respondents (i.e., 31.4%) indicated that the doctor was not even ''moderately well-educated'' about ET. Only 11.8% of respondents were satisfied with their care. Respondents raised a multiplicity of issues that were not being addressed in their current care. The top items were psychological services and support (33.9%), physical or occupational therapy (28.6%), handling embarrassment and social effects of tremor (15.8%), feelings of not being in control (13.7%), a detailed report and a more quantitative way of assessing tremor and tracking progression (12.7%), better counseling about current treatment and medications (11.9%), empathy, compassion and a feeling of being heard (11.6%), a treatment approach other than just medications and surgery (11.2%), and a discussion of all symptoms aside from tremor (e.g., cognition, balance). Discussion: Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one in 10 patients reported that they were satisfied with their care. It is hoped that patient-centered approaches such as this will lead to improved models for the care of patients with this common chronic disease.

Novel Botulinum Toxin Injection Protocols for Parkinson Tremor and Essential Tremor – the Yale Technique and Sensor-Based Kinematics Procedure for Safe and Effective Treatment

“…Various treatment methods have been developed for the management of tremor including deep brain stimulation (DBS), MRI-guided focused ultrasound, and pharmacotherapy [5]; each having their own disadvantages. Betablockers and anticonvulsants fail in 30% of ET patients and their side-effects result in discontinuation of treatment in another 25-30% of individuals [6,7]. Despite the efficacy of thalamic, subthalamic nuclei and globus pallidus interna DBS, there is a 3-4% risk of adverse events like intracerebral hemorrhage, in addition to the fact that it is a surgical procedure which is not well-accepted by most patients [8].…”

Simulated Tremor Propagation in the Upper Limb: From Muscle Activity to Joint Displacement

“…In the model with default parameters, the cut-off frequency was below the tremor band (around 3 Hz). Although the principles are based on the fact that the harmonics are filtered out (see above), the exact value of the cut-off frequency is not important for two reasons: 1) as long as the cut-off frequency is below the frequency of the first harmonic (8)(9)(10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24) Hz, depending on the fundamental frequency), the harmonics are attenuated relative to the fundamental frequency, and 2) since sub-model 3 also low-pass filters with a low cut-off frequency (range of 1 to 6 Hz, mean 3 Hz), the harmonics would be attenuated even if the cut-off frequency of sub-model 1 were much higher.…”

“…Present treatments for ET, for example, are limited in their effectiveness. A survey of ET patients found that only one in ten was satisfied with their medical care [9]. The two main treatment options are medication and neurosurgery.…”

“…These three factors (tremor is very common, medication is only partly effective in only approximately half of patients, and surgery is often undesirable) show the clear need for alternative treatment options. In fact, surveyed ET patients stated that one of the things most lacking in their treatment was an effective, alternative treatment option -something other than medication or surgery [9].…”

Progress in Management of Essential and Parkinson Disease Tremor with Botulinum Toxin Injections-Established Efficacy and Less Adverse Effects

“…Pharmacological treatment of severe ET and PD-related tremor is difficult. Approximately 30% of patients with ET do not respond to pharmacological treatment (betablockers or anticonvulsant) and another 25-30% stop the medications due to side effects or dissatisfaction with treatment [4,5]. Deep brain stimulation of thalamic and subthalamic nuclei and globus pallidus interna (GPI) is currently the most effective mode of treatment for both essential and Parkinson tremor.…”