(P 90) RESULTS FROM AN INTERNATIONAL SURVEY OF BONE SARCOMA PATIENTS

Objective: To create a comprehensive landscape of the views and experiences of the global bone sarcoma patient community in order to provide input to clinical delivery and help set research agendas. Further, to explore commonalities and differences between the different bone sarcoma types from the perspective of patients. Arising from discussions in the patient and parent group within the FOSTER (Fight OsteoSarcoma Through European Research) consortium a group of patients, parents and advocates from multiple countries and bone sarcoma patient communities have come together to produce an international online survey.

Methods: Available in six languages, this online survey asks questions on diagnosis and treatment, priorities for clinical research, quality of life and survivorship. The survey is designed to be global in scope rather than European only, as well as including all bone sarcoma types. In addition to demographic data, such as age, gender, country and disease type, the data shows the priorities for future research broken down by disease (Chordoma/Osteosarcoma/Ewing's sarcoma/Chondrosarcoma/Other).

Results: The survey was launched in January 2023. An interim analysis in May 2023 showed that detailed data from 480 respondents, from 23 countries, had been collected. In terms of disease areas, data had been collected for Chordoma (n=70, 15%), Osteosarcoma (n=173, 36%), Ewing’s sarcoma (n=100, 21%), Chondrosarcoma (n=47, 10%) and other bone sarcomas (n=31, 6%). Demographic data, in terms of age and gender distribution for these responses are in line with clinical data. For example, median age, in years, at diagnosis by disease type is Chordoma 47.5, Osteosarcoma 15, Ewing's sarcoma 14, Chondrosarcoma 41 and other 39. While the majority of patients in all subtypes are diagnosed with localised disease (60 – 70%), the rate of initial misdiagnosis varies by sarcoma type - Chordoma 35%, Osteosarcoma 21%, Ewing's sarcoma 28%, Chondrosarcoma 44%, and other 54%. The top three ranked research priorities in diagnosis, drug treatment, surgery, support needs, survivorship and quality of life research also show a diverse pattern of overlaps and differences according to bone sarcoma type.

Conclusion: The survey will remain open until December 2023, and two more languages are due to be added. Analysis of the latest data will be performed prior to CTOS Dublin, including more detailed exploration of patient experience of current treatments and priorities for future research. Our preliminary data already shows that although the different bone sarcoma types differ in biology and treatment, there are also many commonalities from a patient perspective. Results to date show remarkable convergence of ranked priorities across the different bone sarcomas, providing the opportunity for potential synergies in research. In addition, the experience of bringing together the different bone sarcoma subtypes has been positive and a major driver of the emergence of a distinct bone sarcoma community ready to collaborate further.