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

Author(s)

Qiao X1, Sun C1, Jia Y2, Li H1, Gu H3, Hu M1
1Fudan University, Shanghai, China, 2Fudan University, Rochester, NY, USA, 3Hongmian Cancers & Rare Disorders Charity Foundation of Guangzhou, Guangzhou, China

Presentation Documents

OBJECTIVES: Multiple sclerosis (MS), a chronic neurologic disorder, induces a worldwide challenge due to delay in diagnosis. Diagnostic delay of MS can adversely affect the timeliness of treatment and prognosis. However, in China, where MS is classified as a rare disease, the existence and factors contributing to diagnostic delay are not well studied. This study aimed to evaluate the prevalence of diagnostic delay of MS in China and identify its associated factors.

METHODS: We conducted a nationwide cross-sectional study in July 2022 using online surveys. Patients provided information including socio-demographic details and diagnostic experience. Diagnostic delay, defined as the period exceeding six months from symptom onset to diagnosis, was categorized into “patient delay” (delay in seeking clinical consultation) and “system delay” (delay within the healthcare delivery system). Factors associated with diagnostic delay, such as age, gender, marital status, education, residence, employment status, insurance coverage, household income, and initial clinical consultation department, were analyzed using binary logistic regression.

RESULTS: Out of 658 participants (67.3% female; mean age 34.6 years, SD 9.8), the average duration from symptom onset to diagnosis was 14.84 months (SD 31.90; median 3 months). Overall, 37.84% experienced diagnostic delay, with 18.09 % attributed to patient delay and 33.59% to system delay. Patients choosing to first consult departments other than neurology or neurosurgery were more likely to experience diagnostic delay (OR = 3.91, p<0.001) than those who initially consulted proper department.

CONCLUSIONS: Diagnostic delay in MS is a significant concern in China, predominantly attributed to system delay. Given the absence of a primary health gatekeeping system in China, patients’ choice of initial consultation department based on personal judgment is a key barrier to early diagnosis. Therefore, there is a pressing need to improve disease awareness among the public and diagnostic capabilities among physicians, ensuring timely referrals and reducing the delay in MS diagnosis.

Conference/Value in Health Info

2024-05, ISPOR 2024, Atlanta, GA, USA

Value in Health, Volume 27, Issue 6, S1 (June 2024)

Code

PCR143

Topic

Patient-Centered Research

Topic Subcategory

Patient Behavior and Incentives

Disease

Neurological Disorders, Rare & Orphan Diseases

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