(P 206) PATIENT PERSPECTIVE ON LIPOSARCOMA DIAGNOSTIC JOURNEY: INTERIM PATIENT SURVEY RESULTS

Objective: Liposarcomas (LPS) are rare tumors that arise from lipocytes in soft tissues. Challenges with accurate diagnosis of soft tissue sarcomas, as well as a standard of care that has generally remained unchanged since the 1970s, contribute to patient (pt) burden. As misdiagnoses can delay appropriate treatment and worsen prognoses, there is a need to better understand the diagnostic pathway. Further, the pt perspective on the diagnostic pathway can be critical for highlighting where healthcare professionals (HCPs) can optimize diagnosing LPS and provide appropriate care. Here we present interim results of a pt survey conducted to help understand the diagnostic journey and treatment patterns for pts with LPS in the US.

Methods: Pts with LPS aged ≥18 years in the US completed an online survey about the diagnostic journey, burden of disease and treatment, quality of life, and sources of support. The survey was designed and facilitated by Savvy Cooperative in cooperation with Boehringer Ingelheim Pharmaceuticals, Inc and Sarcoma Foundation of America. Survey enrollment is ongoing. A descriptive statistical analysis was performed.

Results: Pt demographics and survey responses are summarized in the Table. Of the 40 pts who completed the survey between August 4, 2023, and March 1, 2024, most pts were men, White/Caucasian, and had employer-provided insurance. Thirty pts responded about the time to initial HCP visit after symptom onset: 19 met with an HCP within 0-6 months of symptom onset, 6 met with an HCP 6-12 months after symptom onset, and 5 met with an HCP >12 months after symptom onset. Before receiving LPS diagnosis, 38% of pts received another diagnosis related to symptoms or concerns about LPS; this included lipoma, gastrointestinal conditions, or cysts. Of the 23 pts who reported being aware of biomarker testing, 15 pts confirmed they received biomarker testing, 3 pts did not receive biomarker testing, and 5 pts were not sure. Thirteen of the 15 pts who received biomarker testing reported that health insurance covered the cost of biomarker testing. Disease stage was evenly distributed across all pts (stage 1: 20%; stage 2: 15%; stage 3: 20%; stage 4: 15%), and tumors were primarily located in the limbs (40%) or retroperitoneum (30%). LPS metastases were reported in 18% of all pt survey respondents; 15% of all survey pts also reported they were not sure if metastases occurred. Of the 7 pts with LPS metastases, 3 were reported as soft tissue and 1 as osseous whereas 3 were not sure. Nearly half of pts identified as in remission and not on a treatment. LPS recurrence was reported in 23% of the total pt population; however, 13% also reported they were not sure of their recurrence status. The most frequently reported LPS treatment was surgery (83%), followed by radiotherapy (48%) and chemotherapy (25%). Of the 38 pts offered surgical treatment, approximately half underwent 1 surgery whereas the other half reported undergoing 2 or more surgeries.

Conclusion: The interim findings of this pt survey underscore the heterogeneity of the pt experience with LPS, with many pts receiving other diagnoses such as benign growths or gastrointestinal conditions before LPS diagnosis. Further, pts received a variety of treatments (eg, surgery, radiation, chemotherapy, or other medication). As more targeted therapies emerge for LPS, biomarker testing becomes increasingly relevant. These interim findings reflect limited biomarker testing and knowledge about testing options. Results from this pt survey highlight a need for the increased use of biomarker testing as well as pt discussions surrounding options, thereby opening further avenues for potential treatments. Additionally, the results support the need for better methods of diagnosing sarcoma and education about diagnostic resources. Together, these findings shed light on the challenges and opportunities to improve care for this rare tumor type.