Study on Long-Term Quality of Life and Medical Care for Adults Living with Sarcoma in Germany PROSa

What this Trial Is About

Sarcomas are rare cancers that can develop in various parts of the body, making up about one percent of all cancer diagnoses. This research aims to understand the long-term experiences and quality of life of sarcoma survivors in Germany who were diagnosed at least five years ago. The study focuses on patient-reported outcomes, experiences, and socioeconomic conditions, especially in groups with potential long-term risks such as survivors of bone sarcomas and gastrointestinal stromal tumors. The study uses a mixed-methods observational design involving a one-time questionnaire survey of 1,600 sarcoma survivors, conducted on paper or online. Additionally, qualitative interviews with up to 60 participants will be performed, alongside longitudinal analyses that combine data from sarcoma registries and a previous study conducted from 2017 to 2020. No treatments or interventions are given as part of this study. Participants will complete questionnaires covering quality of life, satisfaction with medical care, fatigue, psychological distress, loneliness, physical complaints, communication with healthcare professionals, and socioeconomic factors. Medical data will be collected from patient records to support the analyses. The study aims to identify areas where survivors may have unmet needs or challenges. Participation involves a single assessment, with no follow-up treatments, and the study is expected to continue until September 2027.

Quality of Life and Medical Care of Long-term Sarcoma Survivors in Germany (PROSa+)