Burden of liposarcoma on patients in the United States and their unmet needs: Interim survey results.
Authors: Felser Brandi , Mulligan Dan , Shaberman Amy , Han Jennifer , Stoltzfus Lars 
Published: September 2024

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Background:
Liposarcomas (LPS) are rare tumors that are among the most common soft tissue sarcomas (STS) worldwide. In the US, the incidence rate of LPS is increasing. The variable clinical presentation, prognosis, and response to treatment for the LPS subtypes coupled with the lack of substantial changes to systemic therapy for STS since the 1970s highlight the challenges for patients (pts) in seeking accurate diagnosis and treatment. Data on the impact of LPS on the quality of life (QoL) of pts and their caregivers are limited. Here we present interim results of a survey conducted to help understand the burden of LPS on pts in the US, their diagnostic journey, and the impact on their QoL.
Methods:
Pts with LPS aged ≥18 years and residing in the US completed an online survey on their experiences with the diagnostic journey, burden of disease and treatment, QoL, and sources of support. Survey enrollment is ongoing. A descriptive statistical analysis was performed.
Results:
Of 40 pts who completed the survey between 4 Aug 2023 and 1 Mar 2024, 83% were white and 58% lived in a suburban area. Most pts (60%) had employer-provided insurance, and 13% had an individual insurance plan. Collectively, the pts consulted at least 7 types of specialists for initial symptoms and concerns. Most (n=16) consulted with an internal medicine practitioner first and 10 with an oncologist first; many consulted with oncologists second (n=14) or third (n=10). Most pts (60%) were diagnosed by a surgeon or an oncologist. Nearly one third (n=12) of pts were unsure of their LPS stage at diagnosis; 8 noted that it was not discussed. At the time of completing the survey, 53% of pts were in remission and 18% were unsure of their stage. Approximately 25% of pts needed to travel more than 1.5 hours for treatment. In addition, 25% of pts noted that treatment did not improve their QoL. Patients’ greatest concerns about the impact of LPS were physical condition (73%) and financial aspects (53%). Over half of the pts (55%) reported that there were activities they could no longer perform because of LPS. Pts were most comfortable asking their physicians questions related to LPS, followed by physician assistants. Most pts found support resources through Facebook groups and specialists, reporting peer-to-peer support (48%), financial assistance (30%), and mental health resources (28%) as the most useful types of support.
Conclusions:
The interim findings of this survey underscore the challenges that pts with LPS face while navigating the healthcare system. Consultation of numerous specialists and travel time to receive treatment impact access to timely diagnosis and quality care. The impacts of LPS on QoL and finances were also key unmet needs experienced by pts, which supports an increase in QoL and financial support resources for pts. There is also a need for increased awareness among physicians about LPS and the impact on pts’ QoL as well as for effective treatments that improve QoL.