Purpose

Studies investigating the impact of liposarcoma from the patient’s perspective—including diagnosis, disease presentation, treatment challenges, and quality of life (QOL)—are limited. We report findings from a survey of patients with liposarcoma evaluating the diagnostic/treatment journey, biomarker testing, and QOL.

Methods

Patients with liposarcoma in the United States completed an online survey assessing demographics, diagnostic journey, disease burden, treatment, QOL, and sources of support during diagnosis and treatment. Descriptive statistical analyses were performed, and qualitative written responses from participants were assessed.

Results

Seventy-seven patients with liposarcoma participated in the survey. The proportion of participants with stage I/II/III/IV/unknown liposarcoma at diagnosis was 22%/16%/26%/13%/23%, respectively. Within 12 months of symptom onset, 44/60 respondents (73%) saw a medical professional, and 39/77 (51%) first consulted an internal medicine specialist. Fifty-one of 77 participants (66%) were aware of biomarker testing, and 32/51 (63%) reported receiving it. The most common initial treatments were surgery (47/77, 61%), radiotherapy (15/77, 19%), and chemotherapy (9/77, 12%). Health insurance provided coverage for biomarker testing for 27/31 respondents (87%). Of 77 participants, 38 (49%) traveled ≥1 hour to reach their treatment site, and 27 (35%) relied on care partners such as family members for transportation. Upon treatment initiation, QOL improved for 30/77 participants (39%), did not improve for 29/77 (38%), and 10/77 (13%) were unsure. Forty participants (52%) used social media to obtain disease-specific information and support.

Conclusion

Our survey identified gaps in patients’ awareness and understanding of key aspects of liposarcoma diagnosis and treatment, highlighting a need for better patient education, more effective communication between medical professionals and patients, and a deeper understanding of how treatment impacts patients’ QOL. A fuller picture of the patient burden due to liposarcoma underscores the need for research aimed at improving symptom and disease management, including the development of more effective therapeutics.