(P 201) GLOBAL CROSS-SECTIONAL SURVEY ON SARCOMA DIAGNOSIS PATHWAY: A CURRENT STATE ANALYSIS

Objective: Although data indicating challenges in diagnosing sarcomas exist, such as delays and misdiagnoses, there is a notable absence of comprehensive, internationally collated information about the sarcoma diagnosis pathway. This lack includes socio-demographic factors and other factors that may impact the timing and accuracy of diagnosis, as well as subsequent decisions regarding treatment and follow-up care, including referrals to specialized centers and genomic/mutational testing. To address this gap, the present questionnaire aims to gather data directly from sarcoma patients by using an established network of patient advocacy groups and individuals worldwide.

Methods: The survey is conducted as an online questionnaire, available in 15 languages. Sarcoma patients, family members, and/or caregivers above the age of 18 are invited to take part. Participants are asked to provide details about their sarcoma diagnosis, sociodemographic data, and tumor characteristics. Regarding their diagnosis experience, participants will provide information on the following: the time from first symptoms to diagnosis, any misdiagnoses, referrals to specialist care, barriers to obtaining a diagnosis, early symptoms, the number and type of healthcare professionals seen, and whether any testing (genomic/mutational) was conducted at diagnosis. The sociodemographic data collected include: gender, age, the participant's connection to sarcoma (e.g., patient, caregiver), country of residence, educational level, and access to and affordability of general health services. For tumor characteristics, the survey collects information on the subtype and location of the tumor, the stage of the disease at diagnosis and current status (e.g., active treatment, tumor follow-up), any previous cancer diagnoses, and hereditary syndromes. Awareness of the survey is being promoted through the Sarcoma Patient Advocacy Global Network (SPAGN) and its worldwide network of national sarcoma patient advocacy groups, the network of the Connective Tissue Oncology Society (CTOS) and social media. This is an exploratory research design with the aim of gaining insights into the diagnostic pathways of sarcoma patients. Measures were undertaken to address potential sources of bias: The questionnaire has been reviewed and validated by people/patients from different cultural backgrounds to prevent barriers to understanding the questions. In addition, the survey is available in different languages to avoid language barriers. The survey will be open from July 1, 2024 (start of Sarcoma Awareness Month) until December 31, 2024.

Results: Initial results will be presented during the CTOS Annual Meeting 2024. We aim to collect data on the length of time to obtain an accurate diagnosis of sarcoma and the extent sarcoma patients are confronted with misdiagnoses, by sarcoma subtypes and tumor location. In addition, we will aim to identify variations across nations and regional disparities.

Conclusion: Sarcoma patients and families anecdotally report a delay in diagnosis or misdiagnosis of sarcoma. The findings presented in this study offer valuable insights into the current landscape of sarcoma diagnosis globally. By illuminating existing challenges and pitfalls, this research provides crucial guidance for enhancing the diagnostic pathway within the sarcoma community. Such insights not only enrich our understanding of sarcoma diagnosis but also serve as a vital resource for guiding the sarcoma community towards more timely, accurate diagnosis, and effective treatment of sarcoma.