Management of patients with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is complicated by the challenging diagnosis, monitoring of disease activity, and treatment response. Real world data about the current practice of care in CIDP are rare, but important to improve clinical guidelines. In this study, we determined the current practice of diagnosis and treatment in relation to the clinical outcome of patients with CIDP in a cross‐sectional study in The Netherlands. All patients registered at the Dutch neuromuscular patient organization and patients at the Erasmus Medical Center were approached. CIDP diagnosis was confirmed by using patient files and expert consensus. The response rate was 137/197 (70%) and the diagnosis CIDP was confirmed in 112 patients. The time from onset of symptoms until CIDP diagnosis was median 5 months and > 12 months in 26% of the patients. Patients with a late diagnosis (>5 months) compared to patients with an early diagnosis (≤5 months) more frequently had another initial diagnosis (P < .001), multifocal abnormalities (P = .011), final diagnosis made in university hospitals (P = .001), and more (residual) complaints, also illustrated via two patient reported, validated clinical outcome measures. Although 97% of patients received treatment, 88% reported (residual) neurological symptoms and deficits. CIDP diagnosis is often delayed, especially in patients with atypical CIDP variants. Diagnostic delay may result in delayed initiation of treatment. A more rapid and accurate diagnosis of CIDP may prevent or at least reduce residual neurological deficits and accompanying disability in CIDP.

中文翻译：

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慢性炎症性脱髓鞘性多发性神经根病的临床因素，诊断延迟和残留缺陷。

慢性炎症性脱髓鞘性多发性神经根神经病（CIDP）的治疗因诊断难度大，疾病活动监测和治疗反应而复杂。关于CIDP当前护理实践的真实数据很少，但对于改善临床指南很重要。在这项研究中，我们在荷兰的一项横断面研究中确定了与CIDP患者临床结果相关的诊断和治疗的当前实践。与所有在荷兰神经肌肉患者组织注册的患者和伊拉斯姆斯医学中心的患者进行了联系。通过使用患者档案和专家共识确认了CIDP诊断。缓解率为137/197（70％），确诊为112例CIDP。从症状发作到CIDP诊断的时间中位数为5个月，大于12个月的患者为26％。与早期诊断（≤5个月）相比，诊断较晚（> 5个月）的患者更具有另一种初始诊断（P  <.001），多灶异常（P = .011），大学医院做出的最终诊断（P = .001）以及更多（残留的）抱怨，也通过两名患者报告的有效临床结局指标进行了说明。尽管97％的患者接受了治疗，但88％的患者报告（残余）神经系统症状和缺陷。CIDP诊断通常会延迟，特别是在具有非典型CIDP变异的患者中。诊断延迟可能导致治疗开始延迟。对CIDP进行更快速，准确的诊断可以预防或至少减少CIDP中的残余神经功能缺损和伴随的残疾。