Wolfersheim

This research aims to better understand the experiences, outcomes, and socioeconomic situations of long-term sarcoma survivors in Germany who are at least 5 years post-diagnosis, regardless of whether they currently have active disease. Sarcomas are rare cancers that can appear almost anywhere in the body and represent about one percent of all cancer cases. The study particularly focuses on survivors of bone sarcomas, extremity or trunk sarcomas after multiple treatments, retroperitoneal sarcomas, gastrointestinal stromal tumors (GIST) with or without long-term therapy, and young adult survivors, to explore potential long-term risks and needs. The study involves a mixed-methods approach including a multicenter observational study with a one-time questionnaire survey planned for 1,600 participants using paper and online formats. Additionally, up to 60 participants will take part in qualitative interviews. Longitudinal analyses will also be performed by combining data from existing sarcoma registries and previous research conducted between 2017 and 2020. Recruitment is done through established networks including sarcoma centers, registries, and foundations across Germany. Participants will complete questionnaires assessing quality of life, satisfaction with medical care, use of care services, and unmet needs. Medical data will be extracted from patient records. Researchers will analyze the data using descriptive statistics and regression models to identify areas of impaired quality of life and factors associated with these outcomes. The study is designed to provide a comprehensive picture of long-term survivorship and related challenges in this patient population.