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Introduction <p>Multiple sclerosis (MS) is a rare disease in China. Evidence on the extent and contributing factors of diagnostic delay in China remains limited. This study aimed to assess the proportion and duration of diagnostic delay in MS and to identify associated factors in the Chinese context.</p> Methods <p>In July 2022, we conducted a nationwide cross-sectional survey in collaboration with a major Chinese MS patient network. A random sample of adults (≥ 18&#xa0;years) with a clinically confirmed MS diagnosis was recruited through online patient support groups. Diagnostic delays were defined as the time between symptom onset and a confirmed MS diagnosis, with delays exceeding 3&#xa0;months classified as “delayed”. Delay was further classified into pre-first-consultation and post-first-consultation intervals. Multivariable logistic regression and sensitivity analyses were used to assess associations between diagnostic delay and sociodemographic, clinical, and health system-related factors.</p> Results <p>Among the 722 participants (mean (SD) age 34.62 (9.86) years; 488 women (67.60%), 48.48% experienced a diagnostic delay longer than 3&#xa0;months. The mean (SD) time from symptom onset to diagnosis was 16.23 (35.33) months (median 3.0&#xa0;months), with the majority (mean (SD) 11.27 (27.83) months; median 1.0&#xa0;month) of delays occurring after the first clinical consultation. Higher health literacy (odds ratio (OR) 0.41; 95%&#xa0;CI 0.20–0.84), initial consultation in a neurology/neurosurgery department (OR 0.19; 95%&#xa0;CI 0.12–0.29), and symptom onset in/after 2018 (OR 0.49; 95%&#xa0;CI 0.32–0.75) were associated with lower odds of diagnostic delay. Sensitivity analyses using 2-month and 5-month thresholds confirmed the robustness of these findings.</p> Conclusions <p>MS diagnostic delays are common in China, driven by low health literacy and suboptimal healthcare pathways. Efforts to improve public awareness, implement structured referral systems, and enhance diagnostic capacity are urgently needed. These insights may inform strategies for reducing diagnostic delays in developing countries and improving outcomes for patients with MS.</p>

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Diagnostic Delay in Multiple Sclerosis in China: A Nationwide Cross-Sectional Study

  • 期刊论文

  • 发表日期：

    2026年6月23日

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  • Xuanqi Qiao,
  • Chenhan Sun,
  • Yusheng Jia,
  • Hainan Li,
  • Min Hu

摘要

Introduction

Multiple sclerosis (MS) is a rare disease in China. Evidence on the extent and contributing factors of diagnostic delay in China remains limited. This study aimed to assess the proportion and duration of diagnostic delay in MS and to identify associated factors in the Chinese context.

Methods

In July 2022, we conducted a nationwide cross-sectional survey in collaboration with a major Chinese MS patient network. A random sample of adults (≥ 18 years) with a clinically confirmed MS diagnosis was recruited through online patient support groups. Diagnostic delays were defined as the time between symptom onset and a confirmed MS diagnosis, with delays exceeding 3 months classified as “delayed”. Delay was further classified into pre-first-consultation and post-first-consultation intervals. Multivariable logistic regression and sensitivity analyses were used to assess associations between diagnostic delay and sociodemographic, clinical, and health system-related factors.

Results

Among the 722 participants (mean (SD) age 34.62 (9.86) years; 488 women (67.60%), 48.48% experienced a diagnostic delay longer than 3 months. The mean (SD) time from symptom onset to diagnosis was 16.23 (35.33) months (median 3.0 months), with the majority (mean (SD) 11.27 (27.83) months; median 1.0 month) of delays occurring after the first clinical consultation. Higher health literacy (odds ratio (OR) 0.41; 95% CI 0.20–0.84), initial consultation in a neurology/neurosurgery department (OR 0.19; 95% CI 0.12–0.29), and symptom onset in/after 2018 (OR 0.49; 95% CI 0.32–0.75) were associated with lower odds of diagnostic delay. Sensitivity analyses using 2-month and 5-month thresholds confirmed the robustness of these findings.

Conclusions

MS diagnostic delays are common in China, driven by low health literacy and suboptimal healthcare pathways. Efforts to improve public awareness, implement structured referral systems, and enhance diagnostic capacity are urgently needed. These insights may inform strategies for reducing diagnostic delays in developing countries and improving outcomes for patients with MS.