Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey

The Sarcoma Patients Advocacy Global Network (SPAGN) is shedding light on the complex and often lengthy journey to a correct sarcoma diagnosis through its Global Survey on Sarcoma Diagnosis Pathways. This initiative aims to capture real-world patient experiences worldwide.

At CTOS 2024, preliminary data from over 880 respondents across 40 countries revealed critical insights.

Key Findings at a Glance

👥 Respondent Characteristics:

• Patients only
• Median age: 49 years.
• Gender: 69% female and 31% male respondents.

⏳ Time to Diagnosis:

• The median time from symptom onset to a correct diagnosis exceeds 3 months across the whole patient population, with some patients waiting up to 20 years for their diagnosis.

🩺 Diagnosis Intervals:

• Patient Interval: Median time from symptom onset to the first medical visit: Median of 35 days.
• Care Interval: Median time from the first medical visit to a correct diagnosis: Median of 60 days, with striking variation by age and sarcoma subtype.
  The care interval consistently exceeds the patient interva

❌ Rates of Misdiagnosis:

• Misdiagnoses are prevalent with 22% across all patient groups, with the 30–44 age group reporting the highest rate at 31%.

🔍 Group of 30-44 year olds:

• Among all outcome evaluations, the 30-44 age group stands out with a median diagnostic interval of 5 months and a 31% misdiagnosis rate, higher than the overall average.