Factors Associated with Time to Sarcoma Diagnosis: Results from a Global Cross-Sectional Survey by the Sarcoma Patient Advocacy Global Network (SPAGN)

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Background/Objectives: Sarcomas are rare, highly heterogeneous malignancies comprising more than 100 subtypes. Their nonspecific clinical presentations, frequent misdiagnosis, and limited access to specialized expertise contribute to prolonged routes to diagnosis. Prolonged diagnostic intervals are associated with worse clinical outcomes, yet determinants of time to diagnosis remain insufficiently characterized. Therefore, the aim of this study was to examine clinical, health system, and socioeconomic determinants of time to diagnosis among patients with sarcoma. Methods: We conducted a global cross-sectional survey through the Sarcoma Patient Advocacy Global Network (SPAGN), including 1803 patients and caregivers across 19 languages. Collected data included sociodemographic characteristics, tumor-related factors, healthcare access, and diagnostic timelines. Associations between patient-, tumor-, and system-level variables and time to diagnosis were assessed using multivariable linear regression. Missing data were handled using multiple imputation. Results: The median time to diagnosis was 92 days (interquartile range (IQR): 31–245). Patient-reported barriers to care were strongly associated with prolonged diagnostic intervals. Female gender was independently associated with longer care intervals, while patients from low/lower-middle-income countries reported shorter diagnostic times. Tumor characteristics, age, and stage at diagnosis were not independently associated with time to diagnosis. Conclusions: Timely and accurate sarcoma diagnosis remains a global challenge. Prolonged routes to diagnosis appear to be driven by modifiable structural and socioeconomic factors, including misdiagnosis, limited specialist expertise, and unclear referral pathways, rather than tumor-related characteristics. These findings highlight the need to enhance awareness, streamline referral processes, and expand access to specialized care to reduce avoidable prolonged routes to diagnosis and improve patient outcomes worldwide.

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