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Incorporating the patient voice in sarcoma research: How can we assess health-related quality of life in this heterogeneous group of patients?

Sarcomas are a heterogeneous group of malignant neoplasms arising from mesenchymal cells. There are more than 70 histological subtypes with widely different patterns of stage at diagnosis, prognosis and treatments. Sarcomas can affect patients of any age and occur at almost any anatomical site. They are among the largest groups of rare cancers and are broadly classified into soft tissue sarcomas (STS; 84% of all sarcomas) and bone sarcomas (BS; 14%). The overall incidence of sarcoma is about 6 in 100,000 persons, with 28,000 new cases a year in Europe. When taking all sarcoma patients together they are responsible for 1-2% of all cancer diagnoses in adults.

The broad aim of this project is to raise standards of quality of life measurement in sarcoma patients. We know that the type, location and stage of cancer, the type of treatment, and also sociodemographic variables such as age and sex can influence the quality of life of patients both during and following treatment.

We want to develop a questionnaire that can assess in this group of patients appropriately. This principal investigator of this study is Dr. Olga Husson from The Netherlands.

Funding: EORTC