BackgroundEssential tremor (ET) patients regularly inquire about their prognosis. Therefore, physicians have cause to review available medical literature for meaningful answers. Longitudinal studies are ideally suited to provide a glimpse into the evolution of tremor. Despite its high prevalence, there are surprisingly few longitudinal clinical studies of ET. Furthermore, none of them provide data from the patients’ perspective. Understanding the patient vantage point is valuable as it is the starting point of personalized medicine. Given the progressive nature of ET, we hypothesized that many patients will experience an increase in symptom severity over time. However, due to a lack of clinical data, the exact nature of this progression is unclear. For example, whether patients experience a worsening at each time interval is simply not known. In this longitudinal study, we assessed whether ET patients felt that their symptoms had worsened between each follow-up evaluation and try to identify specific clinical characteristics associated with this experience.MethodsA cohort of 164 ET cases enrolled in a prospective, longitudinal research study. After a baseline in-person assessment, they received regular telephone evaluations for up to 5.25 years, beginning in 2009. During each follow-up evaluation, cases answered the question, “has your ET worsened since our last call?”ResultsTwo-thirds [104 (63.4%)] of ET cases reported worsening at one-half or more of their follow-up evaluations. Furthermore, one in four cases [44 (26.8%)] reported worsening at every follow-up evaluation. Self-reported worsening was not associated with any of the baseline clinical variables assessed, including age, gender, tremor duration, age at tremor onset, or total tremor score.ConclusionLittle has been written from the patients’ perspective on progression of ET. When followed longitudinally at regular intervals, a majority of ET cases we studied reported worsening one-half or more of the time; furthermore, one in four cases reported worsening at each and every assessment, indicating that they felt they were inexorably getting worse and worse with time. That there is so much self-reported worsening in ET argues against the notion that this is a static and benign condition. It suggests that patients experience it as a condition that worsens regularly and consistently.
Background: The burden of mild (i.e., subclinical) tremor within essential tremor (ET) families is not fully understood. We assessed the burden of mild tremor in a cohort of 287 adults, none of whom reported tremor or were diagnosed with ET. Methods: We recruited adults in 2 groups based on the familial risk for ET: 244 high-risk individuals (i.e., reporting one or more first-degree relative with ET) and 43 low-risk individuals (i.e., reporting no relatives with ET). Tremor was objectively assessed on 4 hand-drawn spirals (total spiral score = 0–12). Mild tremor was defined using 3 different cut points. Results: The prevalence rates of mild tremor among high-risk individuals ranged from 41.4 to 98.4% and were highly dependent on the cut point. Above a certain threshold (i.e., a total spiral score ≥5), 1-in-5 (i.e., 19.7%) high-risk individuals exhibited mild tremor, whereas no low-risk individuals did. High-risk individuals were 3.09–4.50 times more likely than low-risk individuals to exhibit mild tremor. Conclusion: The burden of ET extends beyond the boundaries of the clinically defined disease, and partially expressed forms of ET are abundant in ET families. This fact greatly complicates gene-finding studies and epidemiological studies whose goal is to detect disease-linked associations.
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