Epidemiology Branch, National Institute of Environmental Health Sciences, Research Triangle Park, Durham, North Carolina, United States of America.
Westat, Inc., Durham, North Carolina, United States of America.
PLoS One. 2021 May 19;16(5):e0251852. doi: 10.1371/journal.pone.0251852. eCollection 2021.
In epidemiologic studies where physician-based case adjudication is not feasible, Parkinson's disease (PD) case ascertainment is often limited to self-reports which may not be accurate. We evaluated strategies to identify PD cases in the Agricultural Health Study (AHS).
Doctor-diagnosed PD was self-reported on all cohort-wide surveys; potential cases were also identified from death certificates. Follow-up surveys asked about PD-related motor and non-motor symptoms. For PD confirmation, we collected additional diagnosis, symptom, and treatment data from 510 potential PD cases or their proxy (65% of those contacted) in a supplemental screener and obtained medical records for a subset (n = 65). We classified PD cases using established criteria and screener data.
Of 510 potential PD cases, 75% were considered "probable" or "possible"; this proportion increased among participants diagnosed by a specialist (81.2%), taking PD medication (85.2%), or reporting ≥5 motor symptoms (86.8%) in a regular AHS survey. Of those with medical records, 93% (57 of 61) of probable or possible PD was confirmed. Never-smoking and non-motor and motor symptoms reported in prior AHS surveys were more common with probable/possible PD than unconfirmed PD.
In this retrospective PD case ascertainment effort, we found that PD self-report with information on motor symptoms or medications may be a reasonable alternative for identifying PD cases when physician exam is not feasible. Because of intervening mortality, screeners could not be obtained from about one-third of those contacted. Thus, findings warrant replication.
在不进行医师确诊的流行病学研究中，帕金森病（PD）的病例确定通常仅限于自我报告，而自我报告可能并不准确。我们评估了在农业健康研究（AHS）中识别 PD 病例的策略。
所有全队列调查均自我报告了医生诊断的 PD；也从死亡证明中确定了潜在病例。后续调查询问了与 PD 相关的运动和非运动症状。为了确认 PD，我们从 510 名潜在 PD 病例或其代理人（联系到的 65%）的补充筛选器中收集了更多的诊断、症状和治疗数据，并为一部分（n=65）获得了医疗记录。我们使用既定标准和筛选器数据对 PD 病例进行分类。
在 510 名潜在 PD 病例中，75%被认为是“可能”或“很可能”；在由专家诊断、服用 PD 药物或在常规 AHS 调查中报告≥5 个运动症状的参与者中，这一比例分别增加到 81.2%、85.2%和 86.8%。在有医疗记录的病例中，93%（57 例）的可能或很可能 PD 得到了确认。在之前的 AHS 调查中从未吸烟以及报告的非运动和运动症状在可能/很可能 PD 中比未确认 PD 更常见。
在这项回顾性 PD 病例确定工作中，我们发现，在无法进行医师检查时，PD 自我报告加上运动症状或药物信息可能是识别 PD 病例的合理替代方法。由于中间的死亡率，无法从联系到的三分之一左右的人那里获得筛选器。因此，研究结果需要进一步验证。
