Patients With Essential Tremor Report High Levels of Dissatisfaction With Treatment Options
In a large-scale analysis. 70% of patients with essential tremor and 70% of undiagnosed patients reported dissatisfaction with the therapeutic options available to treat their condition.
Augusto Grinspan, MD
A study analyzing patient motivations for advanced treatment of essential tremor (ET) and tremor-dominant Parkinson disease (TDPD) revealed that most patients are dissatisfied with medication options to treat their condition. Focused ultrasound (FUS), an incision-free, minimally invasive treatment for ET, was well-considered by patients; however, barriers to pursuing this advanced treatment included tremor severity and unwillingness to travel to a treatment site.1
The study, presented at the 3rd Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 22-25, 2024, comprised of 145,286 total patients with tremor who interacted with the Insightec educator team. The average age of respondents, collected from August 2015 to December 2023, was 71 years old. Of them, 57% had a formal diagnosis of tremor (ET: 44%; TDPD: 13%) and 43% did not.
Led by senior author Augusto Grinspan, MD, chief medical officer at Insightec, the study collected data on demographics, diagnostic status, medication status and satisfaction, impact of tremor severity, physician management of tremor, and considerations for advanced treatment options, such as deep brain stimulation and FUS. All told, results showed that approximately 70% of patients with ET and 70% of undiagnosed patients are dissatisfied with medication options for tremor. Notably, almost all respondents interested in FUS (98.8%) have tried medication for tremor, but satisfaction was reportedly low, with less than 25% in all diagnostic groupings.
In terms of impact on daily life, most patients with ET rated the impact as moderate (around 53%). Of note, more patients in this group rated their condition as severe (around 25%) than mild (around 19%). Among those not diagnosed, more than half of these patients rated their condition as mild in terms of impact on daily life. Patients with TDPD seemed to experience the most burden from treatment, with 25% of patients reporting additional side effects vs less than 20% for those with ET or undiagnosed patients.
In terms of physician management, tremor was managed approximately equal by neurologists (46%) or primary care physicians (43%) for patients with ET. In patients with TDPD, tremor was managed predominantly by neurologists (58%). Undiagnosed patients were shown to be managed mainly in primary care settings (47%). Of note, few patients were managed by a movement disorder specialist. Those with TDPD had the most experience with movement disorder specialists, with nearly 20% being primarily cared for by this personnel.
READ MORE: Survey Reveals Barriers to Symptom and Concern Disclosure in Movement Disorders
For FUS-specific considerations, most patients did not object. Comprising more than 10,000 respondents, around 90% said they would be willing to shave their head and slightly more than 90% noted that they are not severely claustrophobic. Additionally, more than 90% responded that they were able to lie flat. Overall, the most common barriers to pursuing advanced treatment by FUS included tremor severity (not severe enough yet) and unwillingness to travel to a treatment site.
Previous research has shown that mild to moderate tremor severity can sometimes be controlled with occupational treatment, speech therapy or psychotherapy, or adaptation of coping strategy. First-line pharmacological treatments include symptomatic treatment with propranolol, primidone, and topiramate. Botulinum toxin has also been considered for select cases.
In 2022, the FDA approved an expanded indication of Insightec’s Exablate Neuro platform to include the treatment of both sides of the body in patients with ET. The device, which uses FUS waves, was originally approved for the treatment of medication-refractory ET in 2016, and later received approval for TDPD in 2018. The latest approval allows appropriate patients to have their second side treated at least 9 months after treatment of the first side.2
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