When a person with essential tremor (ET) meets with a doctor (neurologist, movement disorder specialist, general practitioner, etc.) in most cases the physician’s attention is directed to the involuntary rhythmic motions that characterize ET. That’s because he or she has been trained to evaluate and treat physical problems and ailments.
In 2012 Dr. Elan Louis, one of the foremost U.S. authorities on ET, and colleagues published a study on 70 ET patients with similar tremor severity but varying degrees of depression [i]. They divided the patients into three groups according to their depression symptoms: 41 persons with minimal symptoms, 24 with moderate symptoms, and 5 with severe symptoms. They evaluated each person’s self-reported quality of life (QOL), tremor-related disability, and compliance with taking medications. They then looked for patterns based on the degree of depression.
How You Feel About Your Tremors Makes a Difference
Not surprisingly, those with the least depression reported the highest QOL levels while those with the greatest depression had the lowest QOL levels. In fact, the authors’ analysis showed that it wasn’t the severity of tremors as such that resulted in low QOL, it was the fact of how depressed the person was over having ET. Remember, all 70 participants in the study had roughly equivalent tremors as measured in their physical examination, but not all of them felt the same way about the fact of having them.
The authors wrote, “The physical disability caused by the tremor of ET has traditionally been regarded as the most important feature of the disease that causes distress, and it has received the most attention… Our data indicate that this may not be the case.” In other words, doctors need to attend to the emotional and QOL issues facing those with tremors.
How to Measure Quality of Life
There are many standardized questionnaires used to gauge QOL, including some that are specifically designed for health-related quality of life, or HRQL. However, there is one particular questionnaire that is exclusively for ET, the Quality of Life in Essential Tremor Questionnaire (QUEST) [ii]. This 30-item questionnaire for patients was first published in 2005 to fill an unmet need, since other HRQL tools don’t address the daily realities of living with ET. It is designed to be simple to complete and score, and takes most respondents 5-10 minutes to fill it in. For instance, items address such matters as:
- Interference with sexual satisfaction
- Difficulty communication with others
- Job/professional problems
- Financial concerns
- Eating, drinking, dressing, etc.
If you are interested, you can read the entire questionnaire (and review how it’s scored) here. While I do not recommend trying to score it and interpret it yourself, I think you will feel very validated by the way it recognizes what confronts persons with “the shakes.” NOTE: It’s important to understand that the way the questionnaire is constructed, the lower the score, the higher the QOL; put another way, higher scores indicate greater obstacles to QOL.
Has Your Doctor Asked You About Your Quality of Life?
Unless you’re seeing a tremor or movement disorder specialist, it’s possible that your medical caregiver does not use the QUEST Questionnaire. The next time you visit your doctor, you might consider printing a copy from the link above, and bringing it with you. It’s my philosophy (and may not be every doctor’s viewpoint) that the more I know about the whole person, the better the service I can offer. A human being is more than the total of his or her physical symptoms. Even the word “disease” suggests that a bodily ailment robs one of enjoying life because it puts one at DIS-EASE, or a state of uneasiness.
It has been my experience with the neurosurgeons and neurologic caregivers affiliated with Sperling Neurology Associates are incredibly compassionate people who care deeply about each patient’s quality of life. It is my hope that your doctor is equally empathic, and understands that tremors themselves may not be what disrupts your life the most, but how your experience their impact on your mind, heart and spirit as well as your body.
NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you have health concerns or questions of a personal medical nature.
[i] Louis ED, Huey ED, Gerbin M, Viner AS. Depressive traits in essential tremor: impact on disability, quality of life, and medication adherence. Eur J Neurol. 2012 Oct;19(10):1349-54.