Objective: To understand the experience of living with essential tremor (ET), we ran a lived-experience focus group that examined impact of tremor of daily life, medication satisfaction, treatment pathways, and motivations for advanced therapies. Insights compared to patient-reported data (n=63,611) taken via questionnaires¹.

Background: ET is a common movement disorder that significantly impacts daily life². In ~50% of people, medications do not provide ample benefit or cause side effects³. For medication-refractory ET, advanced treatments like botulinum toxin, deep brain stimulation and magnetic resonance-guided focused ultrasound are endorsed by the International Parkinson and Movement Disorder Society⁴.

Method: Eleven people with ET (9M/2F, av. age 74.4yrs, av. tremor 28.6yrs) participated in an asynchronous virtual platform over two weeks, comprised of private questions and open forum dialogue that promoted participant interaction (aided by authors RM, LK and KG). Focus group data were compared to larger database (n=63,611) of ET survey responses¹.

Results: Participants had a formal diagnosis of ET and reported moderate-severe tremor impact, even with mild tremor severity. All participants tried medication, with 9% reporting satisfaction. Tremor was mainly managed by general neurologists (36%) and primary care (36%), less by movement disorder specialists (18%); 9% not seeing a physician. Tremor treatment information obtained only 9% from a physician, while 73% utilized the internet and 18% word of mouth. Notably, the large cohort (ET=63,611) similarly reported trying medication (99%) with low satisfaction (12%), and tremor managed by general neurologists (46%) and primary care (43%), not movement disorder specialists (<4%). Key insights discuss a lack of treatment information/awareness, impact on quality of life, variability in treatment experience/effectiveness, desire for non-invasive treatments, community/support, and need for better physician engagement/education.

Conclusion: Individual ET perspectives show notable similarities to large cohorts in daily life, medication satisfaction and tremor management. Negative impacts on quality of life, and lack of satisfaction in current medication and clinical care suggests advanced treatments are warranted, with clinician communication vital. ET guidance by movement disorder specialist is low; future work should focus on increasing involvement.

References: 1. Martuscello R, et al. Patient Motivations for Advanced Treatment of Essential Tremor and Tremor-Dominant Parkinson’s Disease. Poster, June 2024 ATMRD. Posters – Advanced Therapeutics in Movement & Related Disorders™

2. Gupta HV, et al. Exploring essential tremor: Results from a large online survey. Clin Park Relat Disord. 2021;5:100101.

3. Zesiewicz TA, et al. Evidence-based guideline update: treatment of essential tremor: report of the Quality Standards subcommittee of the American Academy of Neurology. Neurology. 2011;77(19):1752-5.

4. Ferreira JJ, et al. MDS evidence-based review of treatments for essential tremor. Mov Disord. 2019;34(7):9508.

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