SPAGN Global Sarcoma Diagnosis Pathway Survey
What can patients tell us about the path to sarcoma diagnosis?
How long does it take to receive a sarcoma diagnosis, and what challenges do patients encounter along the way?
SPAGN conducted the Global Sarcoma Diagnosis Pathway Survey to better understand the diagnostic experiences of patients and caregivers worldwide, identify common barriers and highlight opportunities to improve sarcoma awareness and diagnosis.
With responses from more than 1,800 participants across 49 countries, the survey provides an important patient-reported perspective on the diagnostic journey.
Explore the findings below and discover the experiences behind the numbers.
The diagnosis survey in numbers:
29 Days
Median Time from first symphtoms to seeking medical care
60 days
Median time from first medical contact to diagnosis
22.7%
Reported a change in their diagnosis during their patient journey
33.8%
Reported lack of awareness about sarcoma among HCPs as a barrier to diagnosis
Publication & Podcast
Building on the first findings presentations, a full scientific analysis of the Global Sarcoma Diagnosis Pathway Survey has now been developed and published under the title “Factors Associated with Time to Sarcoma Diagnosis.”
This peer-reviewed publication provides a comprehensive evaluation of the global dataset, examining which patient-, socioeconomic-, and system-level factors are associated with prolonged diagnostic timelines in sarcoma.
The publication translates the initial findings into a detailed scientific analysis and further confirms that diagnostic delays are primarily driven by modifiable healthcare system and awareness-related factors rather than tumour characteristics.
Resources
đź“„ Read the publication here!
Introducing the SPAGN Data Explorer
And now, we're taking the next step! Alongside the survey findings, we have developed the SPAGN Data Explorer – an interactive tool that allows you to explore the survey results in greater detail.
Go beyond the headline figures and discover what patients and caregivers shared about their experiences. Explore responses related to symptoms, diagnostic intervals, healthcare pathways and barriers to diagnosis, and look at the findings across different sarcoma subtypes and countries.
Whether you are a patient advocate, healthcare professional, researcher or simply interested in understanding the diagnostic journey, the Data Explorer offers a new way to engage with the findings and uncover insights from the experiences shared by more than 1,800 respondents.
Explore the data. Gain new insights. Ask your own questions.
A strong global patient voice
We thank everyone who participated in the survey and shared their experiance. Every response contributes to a better understanding ot the diagnostic journey and supports our collective efforts to drive change.