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

Summary

The study PROSa+ aims to assess patient-reported outcomes (PROs), patient-reported experiences (PREs), and the socioeconomic situation of long-term sarcoma survivors (≥ 5 years post-diagnosis, with or without active disease) in Germany. The mixed-methods research design includes a multicenter observational study with a cross-sectional questionnaire survey involving 1,600 participants (paper, online), qualitative interviews with up to 60 participants, and longitudinal analyses combining data from existing sarcoma registries and the previous PROSa study conducted between 2017 and 2020.

Eligibility

Inclusion Criteria:

* Diagnosis of sarcoma according to the International Classification of Diseases for Oncology (ICD-O) and World Health Organization (WHO) classification, including soft tissue sarcoma, bone sarcoma, and GIST
* At least 5 years since initial sarcoma diagnosis
* With or without active disease
* Age ≥18 years at the time of study participation

Exclusion Criteria:

* Diagnosis of Desmoid tumors
* Inability to complete a structured questionnaire (e.g., due to insufficient German language skills, cognitive impairment, dementia)

Conditions5

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