Abstract
Background: Essential tremor (ET) is among the most prevalent neurological diseases. Age of onset, a key variable in neuroepidemiological and genetic research, is chiefly assessed by self-report rather than medical record review; the latter may be of little use. As a researcher, one wonders about the quality of this self-report. Is age of onset something which can be reproducibly self-reported by patients? There are few published data to aid researchers. Methods: Age of onset was self-reported at two time points (baseline and follow-up) in 86 ET cases in a longitudinal epidemiological study in New York. Results: The mean follow-up interval was 5.7 ± 2.5 (maximum = 14) years. Overall, agreement between the baseline and follow-up reports was high (ρ = 0.85, p < 0.001). Yet the difference (age of onset baseline-age of onset follow-up) ranged widely (from-47 to 32 years), and in one fifth of cases was ≥10 years. Greater agreement was associated with several clinical factors including age, medication use, embarrassment, depressive symptoms, cognitive test score and disease duration. Conclusions: Differences in reported age of onset in ET may vary widely, and in up to one fifth of patients may be substantial. Investigators should approach these self-reports with caution.
Original language | English (US) |
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Pages (from-to) | 93-98 |
Number of pages | 6 |
Journal | Neuroepidemiology |
Volume | 40 |
Issue number | 2 |
DOIs | |
State | Published - Feb 2013 |
Externally published | Yes |
Keywords
- Age of onset
- Clinical factors
- Epidemiology
- Essential tremor
- Genetics
ASJC Scopus subject areas
- Epidemiology
- Clinical Neurology