(P 136) SETTING THE INTERNATIONAL RESEARCH AGENDA FOR SARCOMA WITH PATIENTS AND CARERS: PRELIMINARY RESULTS OF PHASE II OF THE SARCOMA PATIENT ADVOCACY GLOBAL NETWORK (SPAGN) PRIORITY SETTING PARTNERSHIP

Objective: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this study is to identify priorities for research and patient advocacy topics.

Methods: During the first phase of the study, a collaboration was set up between SPAGN and stakeholders from the sarcoma field. This study included patients and survivors of sarcoma (including GIST and desmoid fibromatosis), carers or family members of people who have (had) sarcoma and patient advocates. In the first phase of this study, unanswered questions regarding sarcomas and topics for patient advocacy groups were identified using an online questionnaire. Results of the first phase of the study were refined to a list of 24 research topics (table 1) and 14 patient advocacy topics (table 2). Research topics focus on the origin of sarcoma, the diagnostic process, treatment and side effects, prognosis, quality of life and end of life. Topics for patient advocacy focus on the diagnostic process, communication between patients and caregivers, data sharing, information, quality of life, end of life, expert centers and off-label or compassionate use medications. In the second phase of the online survey, participants are asked to fill in a top 5 and a top 3 of research and patient advocacy topics, respectively. The following sociodemographic characteristics are collected: gender, age, respondent’s connection with sarcoma (e.g. patient, carer), ethnic origin, country of residence and educational level of the respondent. For sarcoma characteristics, the following items were collected: tumor type and location, intention of treatment (e.g. curative, palliative), type of treatment, disease stage and current situation (e.g. active treatment, follow-up). Awareness for the survey is being created via the network of SPAGN and social media.

Results: The first phase of the survey resulted in 264 participants (ESMO Open 2022). A preliminary analysis in May 2023 showed that 408 patients, carers and patient advocates filled out the second part of the survey. The majority of participants are patients diagnosed with a soft tissue sarcoma, GIST or bone sarcoma. Currently included participants are living in Europe, the United States, Asia and Brazil.

Conclusion: The online survey will be open for participation until July 2023. Results will be presented at CTOS 2023. We aim to have an accurate representation of the sarcoma community involving patients with diverse sarcoma subtypes and demographic backgrounds. These results could provide guidance for investigators and can assist in improving sarcoma patient’s care.