Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting

Puzzle piece between two bridgesAbstract

Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care.

Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International Essential Tremor Foundation. The questionnaires were completed online and data were available in electronic format.

Results: There were 1,418 respondents. One in three respondents (i.e., 31.4%) indicated that the doctor was not even ‘‘moderately well-educated’’ about ET. Only 11.8% of respondents were satisfied with their care. Respondents raised a multiplicity of issues that were not being addressed in their current care. The top items were psychological services and support (33.9%), physical or occupational therapy (28.6%), handling embarrassment and social effects of tremor (15.8%), feelings of not being in control (13.7%), a detailed report and a more quantitative way of assessing tremor and tracking progression (12.7%), better counseling about current treatment and medications (11.9%), empathy, compassion and a feeling of being heard (11.6%), a treatment approach other than just medications and surgery (11.2%), and a discussion of all symptoms aside from tremor (e.g., cognition, balance).

Discussion: Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one in 10 patients reported that they were satisfied with their care. It is hoped that patient-centered approaches such as this will lead to improved models for the care of patients with this common chronic disease.

Elan D. Louis , 1,2,3* , Brittany Rohl 1 & Catherine Rice 4

1 Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA, 2 Department of Chronic Disease Epidemiology, Yale School of Public Health, Yale University, New Haven, CT, USA, 3 Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, Yale University, New Haven, CT, USA, 4 International Essential Tremor Foundation, Lenexa, KS, USA

Defining the Treatment Gap in ET full article (pdf)

Register Now for the Essential Tremor Symposium on September 19, 2015

Holy Cross Hospital, Silver Springs, MDEssential Tremor (ET) affects 7 million Americans. If you, a family member, or a friend have ET, you are invited to attend a free symposium sponsored by HopeNET, an all-volunteer, non-profit.

This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910.  The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions.   There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.

Information about HopeNET may be found at You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley. As HopeNET is now doing more, please make a donation by going to our webpage or by mailing a check to 14425 Coachway, Centreville, Va. 20120.

September 19, 2015 Symposium Speaker – Kelly Naranjo

DNA helix strandKelly Naranjo is going to be a speaker at the September 19, 2015 Symposium discussing a new study as mentioned below in her letter to HopeNet.  Please contact her at if interested.

Dear Peter,

My name is Kelly Naranjo and I am one of the new research associates at Yale University working under Dr. Elan Louis in a new study looking at the genetics of essential tremor in families. I have been reading a bit about your efforts to increase awareness of essential tremor and it is truly remarkable, your open letter in HopeNet is especially moving. I think that for the majority of the population, it is very difficult to understand the underlying effects of any medical condition unless they themselves or a loved one suffers from it. That is why education and information is always so important and I truly applaud all your efforts.

I am reaching out to you today because I wanted to tell you a bit more about our new study. I think you might smile a bit because due in part to advocates like yourself, we have more people interested in funding research and working towards finding more information about essential tremor, its causes and in the future a cure. In the previous study FASET I- family study on essential tremor- the research team also looked at genetic factors and a lot of knowledge was gathered, such as the correlation of ages of onset of tremor in various family members. Unfortunately, because the NIH only funded the project for three years and the budget was limited it was not possible to look at unaffected family members.

I wanted to let you know that FASET II, is currently the largest ever NIH funded grant ever, working with participants suffering from essential tremor. The funding period for FASET II is five years and our budget is a lot more generous. This time around we will be collecting samples for DNA analysis for affected as well as unaffected family members. There have been some proposed affected gene loci and having DNA information for the unaffected family members will confirm if any of the proposed gene clusters is a genetic factor.

I wanted to also add that recruiting participants and their families will be a huge effort and we are asking for your help! As an ET advocate and public speaker, I was wondering if perhaps you could help us connect with your network and people who might be interested in participating in this study? I would love to speak on the phone and tell you a bit more about what exactly we are we doing and if you are interested I can even put together a publication package about the interesting findings from the previous study. Please let me know when would be a good time talk on the phone, or if email is easiest.

My contact information is:

Kelly V. Naranjo, B.A Postgraduate Research Associate
Yale School of Medicine Department of Neurology

Thank you! And I look forward to hearing from you soon.

Best, Kelly