The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa)

SIMPLE SUMMARY: Sarcomas are a rare cancer with many different subtypes. They can occur anywhere in the body and are treated in a multi-disciplinary manner. Large studies on the quality of life of sarcoma patients are rare, so little is known about how patients are doing compared to the general population and which groups of sarcoma patients are particularly affected by quality of life limitations. We assessed the quality of life of 1113 sarcoma patients from Germany. The majority were particularly restricted in their emotional functioning, physical functioning, and the exercise of everyday demands (role function). Many of them experienced pain (56%) and fatigue (51%). We found that patients with leg or bone sarcomas were especially affected by quality of life limitations. We also found that patients who received a retirement pension were less affected by quality of life restrictions than patients who had not retired. ABSTRACT: Sarcomas are rare cancers with high heterogeneity in terms of type, location, and treatment. The health-related quality of life (HRQoL) of sarcoma patients has rarely been investigated and is the subject of this analysis. Adult sarcoma patients and survivors were assessed between September 2017 and February 2019 in 39 study centers in Germany using standardized, validated questionnaires (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Associated factors were analyzed exploratively using multivariable linear regressions. Among 1113 patients, clinically important limitations and symptoms were most pronounced in emotional (63%, 95% CI 60–66%), physical (60%, 95% CI 57–62%), role functioning (51%, 95% CI 48–54%), and pain (56%, 95% CI 53–59%) and fatigue (51%, 95% CI 48–54%). HRQoL differed between tumor locations with lower extremities performing the worst and sarcoma types with bone sarcoma types being most affected. Additionally, female gender, higher age, lower socioeconomic status, recurrent disease, not being in retirement, comorbidities, and being in treatment were associated with lower HRQoL. Sarcoma patients are severely restricted in their HRQoL, especially in functioning scales. The heterogeneity of sarcomas with regard to type and location is reflected in HRQoL outcomes. During treatment and follow-up, close attention has to be paid to the reintegration of the patients into daily life as well as to their physical abilities and emotional distress.