Based on responses from 1,803 sarcoma patients and caregivers worldwide, the SPAGN Global Sarcoma Diagnosis Pathway Survey is one of the largest patient-reported studies examining the journey to a sarcoma diagnosis.

The study found that the median time from first symptoms to diagnosis was 92 days, although experiences varied widely, with some patients receiving a diagnosis quickly while others faced delays of many months or even years.

One of the most important findings was that diagnostic delays were more strongly associated with barriers encountered during the diagnostic journey than with the characteristics of the tumour itself. Each additional barrier reported by participants was linked to a 31.5% longer time to diagnosis, highlighting the cumulative impact of multiple obstacles. The most common barriers were misdiagnosis, limited awareness of sarcoma among healthcare professionals and patients, long waiting times, and difficulty accessing the right healthcare provider.

The study also found that women experienced longer diagnostic intervals than men, with delays occurring after entering the healthcare system rather than before seeking medical attention. In addition, tumour subtype, stage at diagnosis, and age were not independently associated with diagnostic time once other factors were considered.

Together, these findings suggest that improving awareness, referral pathways, access to specialist expertise, and reducing misdiagnosis could have a meaningful impact on achieving earlier diagnosis. They also reinforce the importance of continuing to examine how healthcare systems can better support people with suspected sarcoma.

A heartfelt thank you to everyone who contributed to this survey. Your experiences have created valuable evidence that can help inform future improvements in sarcoma diagnosis and care worldwide.

The survey was available in 18 languages and ran from 1 July to 31 December 2024 and it was promoted through SPAGN's global network, member organisations, CTOS, and social media.

The survey collected information on:

• The diagnostic journey, including symptom onset, diagnosis timelines, misdiagnoses, referral pathways, barriers encountered, and genomic/mutational testing.
• Sociodemographic information, including age, gender, country, educational background, access to healthcare, and participants' connection to sarcoma.
• Tumour information, including sarcoma subtype, tumour location, disease stage, current status, previous cancers, and hereditary syndromes.

The dataset includes responses from 1,803 individuals across 49 countries, with a median age of 53 years.

To help make these findings accessible to everyone, we have prepared several resources:

📄 Read the full scientific publication

📑 Read the publication summary

🎙️ Listen to our podcast:Why Medical Systems Delay Sarcoma Diagnosis

Together, these resources provide valuable insights for patients, advocates, healthcare professionals, researchers, and policymakers working to improve earlier diagnosis and better outcomes for people affected by sarcoma.