Table 1
Responses to Survey Question 2: “If You Were Going to Design a Comprehensive Approach/Ideal Clinical Center for the Treatment of Tremor, Which Problems, Aside from Tremor, Would You Focus Attention On?”
| Response Category | Example (Sample Quotation from Respondents) | Number (%) of Patients Who Raised This Issue |
|---|---|---|
| Psychological services/support | “Aid in the mental and emotional feelings dealing with this disease.” | 396 (33.9) |
| Physical or occupational therapy. Help with self or personal care or personal hygiene | “Occupational therapy related to dealing with the effects of tremor on ADLs such as eating and speaking among other things.” “Feeding, preparing meals, bathing, dressing, applying makeup, fixing hair, walking, exercise, driving.” “Help with hygiene issues: clipping toenails, manicures, tweezing eyebrows etc.” | 334 (28.6) |
| Handling embarrassment and social effects of tremor | “Being social with tremor. How to deal with the shame and isolation due to tremor.” | 184 (15.8) |
| Don’t know | “Cannot say.” “Don’t know.” “I am not qualified to comment.” | 127 (10.9) |
| Doctor should discuss more treatment options or alternative treatment options | “Offering a wide range of treatment modalities.” “Better treatment besides brain surgery to control hand tremors.” “Medications, strategies, or alternate methods to improve functioning.” “Alternative treatment options.” | 102 (8.7) |
| Public education/stigma reduction | “A way for the public to not automatically think we have Alzheimer’s.” “Educate the public so there is not such a fear of embarrassment.” | 92 (7.9) |
| More individualized treatment | “A person-centered approach that starts with a full occupational interview, then builds the team from the needs identified from that. For instance, not everyone would be interested in a surgical approach or need a psychiatrist.” | 87 (7.4) |
| Anxiety | “Anxiety caused by dealing with tremor.” | 79 (6.8) |
| Depression | “Dealing with the depression associated with tremor.” | 73 (6.3) |
| Education for patients | “Assembly of a wide range of information resources that someone with essential tremors may consult.” | 59 (5.1) |
| Support groups | “Caring circles.” “Creating an area where people with ET can get together and talk.” | 57 (4.9) |
| Research | “Comprehensive research….Until the cause is identified, the treatments will be unsatisfactory.” | 53 (4.5) |
| Education and support for family members of patients | “Counseling should include the family members who are living with it as well, both as caregivers and potentially future patients.” | 49 (4.2) |
| Treat the whole person | “A health and wellness approach to lessen the tremors.” “Treat the entire person, physical, mental, emotional, etc.” | 46 (3.9) |
| Assistive devices or new technologies to lessen tremor | “Assistive devices which could be taken home and tried, like a computer mouse.” “Gadgets to help with eating and writing.” | 43 (3.7) |
| Better/more comprehensive assessments | “Methodology to analytically differentiate between ET and PD.” “Comprehensive diagnostics.” | 41 (3.5) |
| Speech therapy, help with voice tremors | “I would design some sort of approach on the throat or speech issue caused by this tremor.” | 39 (3.3) |
| Specific mention of stress reduction | “Relaxing techniques in stress situations.” “Stress and relaxation help. Sometimes that helps with the tremors.” “Stress reduction and its effects on tremor.” | 37 (3.2) |
| Dietary/nutrition counseling | “How to arrange my life so as to minimize tremor, e.g., no caffeine, fewer carbs.” | 35 (3.0) |
| Help with employment or workplace issues | “Dealing with employer’s misconceptions.” “Career counseling.” “Counseling for younger people in careers dealing with the problem.” | 29 (2.5) |
| Cognitive issues | “Cognitive functions as related to tremors.” “Cognitive and memory issues related to long term use of tremor meds.” | 26 (2.2) |
| Fewer barriers and better access to treatment | “Have more centers in all states making it easier for ET patients to get to.” | 22 (1.9) |
| Multidisciplinary care and coordinated care across specialties | “Build teams of specialists trained in the treatment of essential tremors.” “Communication between providers to discuss all of the patient’s unique medical needs.” | 22 (1.9) |
| Doctors who understand complex illness and who understand the complexity of ET | “A doctor who understands how different diseases or illnesses may affect the tremor and be understanding of the patient’s challenges.” “Health professionals who know about ET and a comprehensive interprofessional team.” | 22 (1.9) |
| More educated doctors | “Better training for clinicians and doctors to recognize essential tremor as an illness separate from other similar illnesses.” | 21 (1.8) |
| Specific alternative therapies or treatments (e.g., acupuncture, natural remedies, massage therapy) | “Alternative therapies such as acupuncture.” “Alternative medications (prescription and traditional alternative medication) for those of us who respond poorly to the traditionally prescribed meds.” | 15 (1.3) |
| Prognosis | “Examples of what you will and will not be able to do (as ET progresses.” “Preparkinson’s possibility.” “The stages of tremor.” | 14 (1.2) |
| Help for younger or pediatric patients | “Treating tremor in the younger population (under 50).” | 13 (1.1) |
| Social worker to help coordinate services | “A social worker or someone to work towards maintaining your independence.” “Counselor to talk about life needs (disability insurance).” | 13 (1.1) |
| Address sleep problems | “Insomnia…internal tremors that never let you feel relaxed.” “Sleep deprivation, fatigue.” | 11 (0.9) |
| Dealing with frustration | “Dealing with frustration.” “Frustration that stems from not being able to do ordinary tasks quickly and efficiently.” | 9 (0.8) |
[i] ADLs, Activities of Daily Living; ET, Essential Tremor; PD, Parkinson’s Disease.
Table 2
Respondents’ Ratings of the Potential Importance of Specialists in the Treatment of Patients with ET (Survey Question 3)
| Not Important | Only Slightly Important | Somewhat Important | Moderately Important | Very Important | Essential | |
|---|---|---|---|---|---|---|
| General neurologist | 45 (3.3) | 109 (7.9) | 233 (16.9) | 286 (20.7) | 403 (29.2) | 304 (22.0) |
| Neurologist specializing in movement disorders | 6 (0.4) | 16 (1.1) | 39 (2.8) | 67 (4.7) | 317 (22.4) | 971 (68.6) |
| Neurosurgeon | 43 (3.1) | 103 (7.4) | 168 (12.0) | 274 (19.6) | 388 (27.8) | 421 (30.1) |
| Psychiatrist | 79 (5.6) | 113 (8.0) | 228 (16.2) | 280 (19.9) | 389 (27.7) | 318 (22.6) |
| Hearing specialist | 291 (20.8) | 266 (19.0) | 291 (20.8) | 259 (18.5) | 198 (14.2) | 93 (6.7) |
| Someone who can evaluate you for memory problems | 169 (12.1) | 163 (11.7) | 243 (17.4) | 298 (21.3) | 332 (23.8) | 193 (13.8) |
| Physiatrist or physical therapist | 35 (2.5) | 83 (5.9) | 177 (12.5) | 249 (17.6) | 453 (32.0) | 421 (29.7) |
| Gait and balance specialist | 37 (2.6) | 77 (5.4) | 160 (11.3) | 258 (18.2) | 483 (34.1) | 402 (28.4) |
| Dietician | 67 (4.8) | 109 (7.8) | 184 (13.1) | 258 (18.4) | 433 (30.8) | 355 (25.3) |
| Speech pathologist | 95 (6.8) | 97 (7.0) | 193 (13.8) | 283 (20.3) | 412 (29.5) | 315 (22.6) |
| Social worker | 155 (11.1) | 159 (11.4) | 216 (15.5) | 279 (20.0) | 343 (24.6) | 244 (17.5) |
| Genetics counselor | 108 (7.7) | 180 (12.9) | 247 (17.7) | 305 (21.8) | 325 (23.3) | 233 (16.7) |
| Clinical trials specialist | 19 (1.4) | 66 (4.7) | 135 (9.6) | 222 (15.7) | 445 (31.5) | 524 (37.1) |
[i] The number of respondents per row ranged from 1,380 to 1,418.
[ii] ET, Essential Tremor.
Table 3
Respondents’ Ratings of the Potential Importance of Specialists in the Treatment of Patients with ET (Survey Question 3)
| Not Important–Only Slightly– Somewhat Important | Moderately Important | Very Important–Essential | |
|---|---|---|---|
| Neurologist specializing in movement disorders | 61 (4.3) | 67 (4.7) | 1288 (91.0) |
| Clinical trials specialist | 220 (15.7) | 222 (15.7) | 969 (68.6) |
| Gait and balance specialist | 274 (19.3) | 258 (18.2) | 885 (62.5) |
| Physiatrist or physical therapist | 295 (20.9) | 249 (17.6) | 874 (61.7) |
| Neurosurgeon | 314 (22.5) | 274 (19.6) | 809 (57.9) |
| Dietician | 360 (25.7) | 258 (18.4) | 788 (56.1) |
| Speech pathologist | 385 (27.6) | 283 (20.3) | 727 (52.1) |
| General neurologist | 387 (28.1) | 286 (20.7) | 707 (51.2) |
| Psychiatrist | 420 (29.8) | 280 (19.9) | 707 (50.3) |
| Social worker | 530 (38.0) | 279 (20.0) | 587 (42.1) |
| Genetics counselor | 535 (38.3) | 305 (21.8) | 558 (40.0) |
| Someone who can evaluate you for memory problems | 575 (41.2) | 298 (21.3) | 525 (37.6) |
| Hearing specialist | 848 (60.6) | 259 (18.5) | 291 (20.9) |
[i] The number of respondents per row ranged from 1,380 to 1,418.
Table 4
Responses to Survey Question 4: “What Do You Find Lacking in the Treatment You Receive for Your Tremor? What Would You Like to See Happening during a Doctor's Visit That Is Not Happening Now?”
| Response Category | Example (Sample Quotation from Respondents) | Number (%) of Patients Who Raised This Issue |
|---|---|---|
| A better educated doctor | “My experience has been that most primary care physicians seem to know very little about the condition.” | 201 (16.4) |
| Treatment is not effective enough | “A medication that reduced my tremor.” “Effective medicine.” | 198 (16.1) |
| Need for more options and a feeling of being in control | “I need more options about treatment and counseling.” | 168 (13.7) |
| A detailed report. A more quantitative way of assessing tremor and tracking progression | “I would have preferred a detailed report rather than 1 page with my diagnosis and meds.” “Method of quantitatively tracking progression of tremor and/or other ET symptoms.” “Some type of measurement or comparison to track progression.” “Objective measurement of tremor severity vs. last visit. Today, every measure is "subjective".” “Each time we see a doctor, we should be tested for worsening tremor, drawing lines, circles…” | 155 (12.7) |
| Better counseling/management of current treatment and medications | “Closer follow up and guidance when trying different meds.” | 146 (11.9) |
| Nothing is lacking from my ET treatment | “I receive good treatment at the university clinic from movement disorder specialists. I think they are doing all they can with the knowledge and treatments available.” “I’m happy with my neurologist. We have a very good team.” | 145 (11.8) |
| Empathy, compassion, being heard | “What do I think was lacking? Any real understanding of what it's like for the patient.” “Sympathetic discussion instead of 5 minute routine of what has happened since last visit.” “A true sense of caring, understanding.” | 142 (11.6) |
| A treatment approach other than just medications and surgery | “He did not talk to me about diet, research, other possible treatments (other than drugs & surgery).” “Discuss treatments for tremor rather just handing out pills.” | 138 (11.2) |
| Not currently receiving treatment | “I don’t receive treatment.” “No treatment at present.” | 131 (10.7) |
| Discussing and assessing all of my symptoms (mental, balance, etc.) aside from tremor | “Feeling less rushed and able to discuss all of the symptoms that are not being addressed…such as mental state, balance, hearing, memory, etc.” “The neurologists I have seen do not seem to have an adequate understanding of essential tremor. I would like to see a more complete diagnostic test—involving gait, tremor, memory—instead of the extremely basic tests used so far.” | 116 (9.5) |
| Too rapid and/or superficial of an assessment | “He does the ‘fly-by’ approach, hello, let me see your hands, raise them up, hold them out (you can’t tell much, I would rather he see me ‘actively’ hold something like a coffee mug) and then says see you again in six months.” “I am always asked to extend my hands and that is the basis for treatment. Would like to see a more extensive evaluation and treatment plan.” | 105 (8.6) |
| Better communication of knowledge to patient | “Education as my tremors increase. Knowledge reduces fear.” “Good communication between patient and doctor, questions asked and answered.” | 103 (8.4) |
| Better counseling of medication side effects. Side effects of treatment were not discussed | “Education on the side effects of taking additional medications.” | 72 (5.9) |
| Dealing with the psychological and emotional issues related to ET | “A deeper understanding of the emotional toll tremors have.” “More discussion to determine if the patient is depressed.” | 63 (5.1) |
| Prognostic information and dispelling fear for the future | “Information about what one can expect with ET.” “Hope for the future rather than fear.” “Explanation of what to expect in the future.” | 50 (4.1) |
| Movement disorders neurologist and/or a doctor with a specific interest in ET | “It took years to find the right medical team. A general neurologist should know when to quit and send the patient for proper assessment.” “MD's for the most part do not take it too seriously, but I finally got my Dr. to send a referral to a center for Movement disorders.” | 46 (3.7) |
| A doctor who gives advice | “A doctor who gives advice.” “More input from the doctor.” | 40 (3.3) |
| More information about new research findings | “No one seems to give me any information on new treatments or new research that has been done.” “Notification of emerging therapies.” | 38 (3.1) |
| A holistic approach to treatment | “Doctor relies on prescription drugs to mitigate ET challenges rather than alternatives such as acupuncture, massage, relaxation techniques.” “Right now we just monitor and medicate…I would like a holistic approach.” | 34 (2.8) |
| A better educated neurologist | “Currently, I am seeing a neurologist who doesn’t seem familiar with essential tremor.” “I have a general neurologist who doesn't seem to be able to answer my questions.” | 33 (2.7) |
| Physical therapy and help with balance and gait | “I wish a physical therapist had been part of the very frustrating and difficult process of calibration.” “It has never been suggested that I see someone about my balance or gait and I have fallen several times.” | 33 (2.7) |
| A list of services and coordinated care. Better coordination between primary care and neurological specialists | “Not totally familiar with the services offered by their department. A print out of services may have been helpful.” “Better coordination between primary care and neurological specialists.” “Would like to go to ONE doctor for everything or ONE place for everything. My neurologist treats the tremors with medication. I go to my regular MD to treat depression. I go to my eye doctor to treat the eye tremors. And I have nobody for the balance issues and the sleep issues.” | 29 (2.4) |
| Accuracy of diagnosis, second opinions | “I really have not been tested for tremors. Just had to draw a circle and then was told I have tremors. I would really like to know what I have.” “In this clinic, this condition does not seem to be recognized at all, although my doctor says it is ‘quite possible’ that my daughter, my sisters and I have a familial tremor. I would like a definite diagnosis.” | 29 (2.4) |
| Address dietary issues that relate to ET | “Ways to modify the diet to lessen tremor.” “Learning about how certain foods can affect tremors.” | 24 (2.0) |
| Social support and information about other people with ET, family support, support groups | “Acknowledgement that ‘you are not alone’.” “I would like to have doctors point out the tremor support groups that are available.” | 24 (2.0) |
| Help adjusting to work | “Understanding of how the tremor affects my work environment and responsibilities.” “Patients should receive a signed medical form/card that they may present to employers that explains what ET is with the endorsement of a doctor. This will help patients explain to employers that the tremor is not due to alcohol or other ominous reasons.” | 17 (1.4) |
| There is something wrong with the office/clinic environment | “Provide a place to rest after injections are given.” “Help filling in forms at front desk because of tremor!” “Drs. office is an artificial environment that doesn’t reproduce certain situations I experience.” | 16 (1.3) |
| More information about clinical trials and research that is currently recruiting | “I would like for the doctor to be more informed about any new ideas or clinical trials.” “Discuss knowledge of advances and clinical trials.” “A clinical trial specialist to inform me of any new treatments that are undergoing testing and where one can obtain the medication being tested.” | 16 (1.3) |
| Occupational therapy | “Occupational therapy, to assist in learning ways to cope.” “Something to help with writing, eating, or holding objects on bad days.” | 16 (1.3) |
| I feel pressure to have brain surgery | “My last appointment my Dr. simply asked if I was ready for brain surgery. He did not talk to me about diet, research, or other possible treatments.” | 15 (1.2) |
| Geographic constraints to accessing treatment | “I don’t even know who to see locally, and am too old with too many problems to travel far.” | 13 (1.1) |
| Speech therapy/help with voice tremors | “No one offered a speech pathologist and my voice is affected.” “Not only until recently did I realize that tremor was the likely cause of my speech struggles.” | 14 (1.1) |
| Confusion between ET and Parkinson’s disease or dystonia | “Separating Parkinson’s from ET.” “I have been frustrated because I have been diagnosed with ET and then dystonia, can’t get clear on what I have, and as a result can’t participate in clinical trials.” | 10 (0.9) |
| Dealing with problems with memory | “Primidone was ramped up until it about did me in. I ended up in a memory clinic.” “Memory problems.” | 11 (0.9) |
| Financial constraints to accessing treatment | “Tremors occur in common people, not only people with money, but the treatments seem to be out of reach for common people with average incomes.” “Ability to get a second opinion—this is an insurance problem.” | 11 (0.9) |
| Less of a “guessing game” (i.e., trial and error empiric approach to treatment) | “It seems to be a hit or miss attempt at ameliorating tremor.” “Try this one, then try that one.” | 8 (0.7) |
| Hearing problems | “No one has mentioned hearing problems to me—are/might they occur because of tremor?” | 5 (0.4) |
| Help for young patients | “My son has been to 3 different neurologists and because he is young, the neurologists just don’t seem to care about his quality of life or try different regimens.” | 5 (0.4) |
| Suggest products to buy that would help with tremor | “Information on assistive technology.” “Available items you can purchase to help you reduce your tremor.” | 2 (0.2) |
[i] ET, Essential Tremor.
