Understanding Individual Challenges in Treating and Living with Essential Tremor: Results from a Lived-experience Focus Group
Regina Martuscello1, Lindsay Knight1, Ian Pyle1, Angeles Sanchez Fraga2, Cyril Ferrer2, Katie Gant1, Augusto Grinspan1
1Medical Affairs, Insightec, Inc., Miami, FL USA, 2Medical Affairs, Insightec Europe GmbH, Munich, Germany
Objective:
To understand the experience of living with essential tremor (ET), including tremor impact, medication satisfaction, clinical care, and motivations for advanced treatment.
Background:
ET is a common movement disorder that significantly impacts daily life. In ~50% of people, medications do not provide ample benefit or cause side effects. 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 Society but underutilized.
Design/Methods:
Eleven people with ET (9M/2F, av. age 74.4yrs, av. tremor 28.6yrs) participated in a two-week asynchronous virtual platform, comprised of private questions and open forum dialogue that promoted participant interaction (aided by RM, LK and KG). Focus group data were compared to database (n=63,611) of ET survey responses to see if there is concordance between large cohort data and individual perspectives.
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 mainly managed by general neurologists (36%) and primary care (36%), less by movement disorder specialists (18%); 9% see no physician. Tremor treatment information obtained only 9% from a physician, while 73% utilized the internet and 18% word-of-mouth. Notably, the database (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 focus group 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.
Conclusions:
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 suggest advanced treatments are warranted, with clinician communication vital.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.