Department of Neurology, College of Physicians and Surgeons, Mailman School of Public Health, Columbia University, New York, NY, USA.
Neuroepidemiology. 2013;40(2):93-8. doi: 10.1159/000341903. Epub 2012 Oct 24.
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.
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.
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.
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.
特发性震颤（ET）是最常见的神经疾病之一。发病年龄是神经流行病学和遗传学研究中的一个关键变量，主要通过自我报告来评估，而不是通过病历审查；后者可能用处不大。作为研究人员，人们想知道这种自我报告的质量如何。发病年龄是否可以由患者重复自我报告？很少有发表的数据可以帮助研究人员。
在纽约进行的一项纵向流行病学研究中，86 例 ET 病例在两个时间点（基线和随访）自我报告发病年龄。
平均随访间隔为 5.7±2.5 年（最长=14 年）。总体而言，基线和随访报告之间的一致性很高（ρ=0.85，p<0.001）。然而，差异（基线发病年龄-随访发病年龄）范围很广（从-47 岁到 32 岁），在五分之一的病例中差异≥10 岁。更高的一致性与几个临床因素有关，包括年龄、药物使用、尴尬、抑郁症状、认知测试分数和疾病持续时间。
ET 报告的发病年龄差异可能很大，在五分之一的患者中可能差异很大。调查人员在处理这些自我报告时应谨慎。
