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When months matter; modelling the impact of the COVID-19 pandemic on the diagnostic pathway of Motor Neurone Disease (MND)
medRxiv - Neurology Pub Date : 2020-12-22 , DOI: 10.1101/2020.12.22.20248666
Ella Burchill , Vishal Rawji , Katy Styles , Siobhan Rooney , Patrick Stone , Ronan Astin , Nikhil Sharma

Background A diagnosis of MND takes an average 10-16 months from symptom onset. Early diagnosis is important to access supportive measures to maximise quality of life. The COVID-19 pandemic has caused significant delays in NHS pathways; the majority of GP appointments now occur online with subsequent delays in secondary care assessment. Given the rapid progression of MND, patients may be disproportionately affected resulting in late stage new presentations. We used Monte Carlo simulation to model the pre-COVID-19 diagnostic pathway and then introduced plausible COVID-19 delays. Methods The diagnostic pathway was modelled using gamma distributions of time taken: 1) from symptom onset to GP presentation, 2) for specialist referral, and 3) for diagnosis reached after neurology appointment. We incorporated branches to simulate delays: when patients did not attend their GP and when the GP consultation did not result in referral. An emergency presentation was triggered when diagnostic pathway time was within 30 days of projected median survival. Total time-to-diagnosis was calculated over 100,000 iterations. The pre-COVID-19 model was estimated using published data and the Improving MND Care Survey 2019. We estimated COVID-19 delays using published statistics. Results The pre-COVID model reproduced known features of the MND diagnostic pathway, with a median time to diagnosis of 399 days and predicting 5.2% of MND patients present as undiagnosed emergencies. COVID-19 resulted in diagnostic delays from 558 days when only primary care was 25% delayed, to 915 days when both primary and secondary care were 75%. The model predicted an increase in emergency presentations ranging from 15.4%-44.5%. Interpretations The model suggests the COVID-19 pandemic will result in later-stage diagnoses and more emergency presentations of undiagnosed MND. Late-stage presentations may require rapid escalation to multidisciplinary care. Proactive recognition of acute and late-stage disease with altered service provision will optimise care for people with MND. Funding - This research was supported and funded by a grant from the Reta Lila Weston Trust. NS was supported by the National Institute for Health Research University College London Hospitals Biomedical Research Centre.

中文翻译:

当几个月很重要时;模拟COVID-19大流行对运动神经元疾病(MND)诊断路径的影响

背景MND的诊断从症状发作开始平均需要10-16个月。早期诊断对于获得支持性措施以最大化生活质量很重要。COVID-19大流行已导致NHS途径显着延迟;现在,大多数的全科医生任命都是在线进行的,随后延迟了二级医疗评估。鉴于MND的快速发展,患者可能会受到不成比例的影响,从而导致后期出现新的表现。我们使用蒙特卡洛模拟法对COVID-19之前的诊断路径进行建模,然后介绍了可能的COVID-19延迟。方法使用时间的伽马分布对诊断途径进行建模:1)从症状发作到GP表现; 2)专科转诊; 3)神经科任命后的诊断。我们合并了分支来模拟延迟:患者未参加全科医生以及全科医生咨询未导致转诊。当诊断路径时间在预期中位生存期的30天内时,触发紧急情况报告。总诊断时间超过100,000次迭代。使用已发布的数据和《 2019年MND改善护理调查》估算了COVID-19之前的模型。我们使用已发布的统计数据估算了COVID-19的延误。结果COVID前模型重现了MND诊断途径的已知特征,平均诊断时间为399天,并预测有5.2%的MND患者为未诊断的紧急情况。COVID-19导致诊断延迟时间从最初的仅延迟25%的558天延长到最初和次要的75%的915天。该模型预测紧急情况的增加幅度为15.4%-44.5%。解释该模型表明,COVID-19大流行将导致后期诊断以及更多未诊断MND的紧急情况。后期演示可能需要迅速升级为多学科护理。主动识别急性和晚期疾病,改变服务条款将优化对MND患者的护理。资金-这项研究得到了Reta Lila Weston Trust的资助和支持。NS得到了美国国立卫生研究院,大学学院,伦敦医院生物医学研究中心的支持。后期演示可能需要迅速升级为多学科护理。主动识别急性和晚期疾病,改变服务条款将优化对MND患者的护理。资金-这项研究得到了Reta Lila Weston Trust的资助和支持。NS得到了美国国立卫生研究院,大学学院,伦敦医院生物医学研究中心的支持。后期演示可能需要迅速升级为多学科护理。主动识别急性和晚期疾病,改变服务条款将优化对MND患者的护理。资金-这项研究得到了Reta Lila Weston Trust的资助和支持。NS得到了美国国立卫生研究院,大学学院,伦敦医院生物医学研究中心的支持。
更新日期:2020-12-22
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