Spotlight on Essential Tremor Management and Impact: Results from an Online Survey Capturing HCP and Patient Perspectives of Disease Burden
Richard Able1, Lillian Matthews1, Alex La Croix1, Carol Clark1, Marcio Souza1
1Praxis Precision Medicines
Objective:

Drawing on HCP and patient perspectives, we sought to gain greater understanding of essential tremor (ET), its diagnosis, management and impact.

Background:

Despite being the most common movement disorder, ET remains underrecognized and inadequately managed. Importantly, patients experience daily challenges beyond tremor, with significant psychosocial impact.

Design/Methods:

HCP and patient surveys were conducted in the US with 152 neurologists participating at the 2024 AAN annual meeting in Denver, Colorado, and a total of 411 patients invited via email communication from June-July 2024. Only neurologists treating ET, and patients with an ET diagnosis, were eligible to participate.

Results:

Approximately 85% of neurologist visits are for patients seeking treatment, with ~40% not receiving any treatment. Neurologists noted their patients’ primary challenges as tremor symptoms and impairments in activities of daily living with over 90% of neurologists stating that ET impact on daily living and its symptoms influence their medical treatment decisions. Neurologists reported confidence in managing ET; nearly half of whom rarely refer patients for specialist management.

Across two separate surveys, patient respondents indicated widespread challenges with typical activities of daily living, with up to 80% noting needing to adjust how they complete daily tasks due to their ET symptoms. Almost all reported a level of psychosocial impact, with many reporting feeling frustrated, ashamed, worried, sad and hopeless due to their symptoms. While treatment regimens are diverse, with many patients on multiple interventions, up to 50% are not receiving any treatment. Up to 77% of patients reported not feeling their symptoms are manageable with current treatments.

Conclusions:

In addition to highlighting the widespread psychosocial burden of ET and its profound impact on daily activities, these findings emphasize the need for more effective, well-tolerated treatments, and the importance of physician-patient dialogue in ET.

10.1212/WNL.0000000000212604
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.