Key Points
- A new study found it often takes years for patients to seek a focused ultrasound consultation for essential tremor, largely due to limited awareness and access issues.
- Women and lower income patients face distinct challenges for diagnosis, consultation, and treatment.
Because barriers often delay diagnosis, referral, and treatment, a new mixed-methods Foundation-funded study is shedding light on the patient journey to receive focused ultrasound ablation for essential tremor (ET).
The research team, led by Vibhor Krishna, MD, and Nicole Silva, MD, at the University of North Carolina—Chapel Hill, used surveys, medical record review, and a focus group to better understand delays in care, quality of life, and patient concerns about the procedure.
The study followed 20 men and 20 women with medication-refractory ET who were seeking consultation for advanced treatment options. Overall, patients experienced long gaps between symptom onset, ET diagnosis, and a focused ultrasound treatment consultation. The median time from symptom onset to diagnosis was 8.5 years, and the median time from diagnosis to focused ultrasound consultation was 12.8 years. Many patients reported that early symptoms did not seem severe enough to seek care, but the study also identified other barriers, including limited knowledge of treatment options, lack of specialists or treatment facilities, and insurance or financial challenges. The most common reason for a delay between medications failing and focused ultrasound consultation was lack of knowledge of the treatment options. Notably, 40% of patients first learned about focused ultrasound from nonmedical sources, including social media, self-directed research, or advertisements.
The study also found some notable gender and socioeconomic differences. Women had more provider contacts before receiving an ET diagnosis compared with men and were more likely to be misdiagnosed with anxiety in that time. Women were also more likely to report worse quality of life at the time of focused ultrasound consultation, despite similar tremor severity. In addition, they expressed greater concern about certain aspects of the focused ultrasound procedure, especially the required head shave and undergoing treatment without anesthesia. Men were more likely than women to receive focused ultrasound during the study period. However, women in the focus group who had the procedure said the head shave was worth the benefits.
Patients with lower income had longer diagnostic delays and longer delays before he focused ultrasound consultation, suggesting that socioeconomic barriers may affect access to advanced treatment.
“Our research show that the clinical pathway to focused ultrasound treatment is often more challenging than it should be,” said Dr. Silva. “By mapping exactly where patients encounter these bottlenecks, we want to empower clinicians to recognize essential tremor earlier, accelerate the referral pipeline, and ultimately ensure equitable, timely access to this life-changing technology when medical therapies fail.”
One major theme the researchers identified from their focus group was the need for the patients to advocate for themselves to get the treatment, which speaks to a continued need for providers to be more aware of focused ultrasound treatment options for their patients. The researchers also found that the patients who underwent the focused ultrasound procedure were generally satisfied with the procedure, expressing willingness to undergo treatment of the second side and experiencing sustained tremor reduction.
In terms of study limitations, the authors noted that this was a small, single-center study, and that larger, more diverse studies are needed. Still, the findings point to practical opportunities to improve care, including provider education, earlier referral, patient outreach, and peer support networks for patients considering focused ultrasound.
See the article in Stereotactic and Functional Neurosurgery
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