PROSA+

Coordinating study lead

Dr. Martin Eichler (Nationales Zentrum für Tumorerkrankungen Dresden Universitätskrebszentrum UCC)

Head of study center Heidelberg

Prof. Dr. Karen Steindorf (DKFZ), Prof. Dr. Richard Schlenk (NCT Heidelberg)

Local coordination and execution in Heidelberg

Dr. Patricia Blickle (DKFZ), Dr. Martina Schmidt (DKFZ), Editha Gnutzmann (NCT Heidelberg), Luis Scheck (NCT Heidelberg)

Short description 

Thanks to improved diagnostics and treatment, more and more people are now surviving a sarcoma and GIST disease for many years, or even decades. However, this often comes with particular challenges, such as the long-term effects of treatment or fears of recurrence. 

Examples of these challenges and consequences include:

• Physical consequences of treatment, e.g. scarring, limited mobility or pain
• Psychological distress and side effects, e.g. fatigue, sleep disorders, anxiety or depressive moods
• Restrictions in everyday life and leisure activities
• Challenges in returning to work
• Financial and economic implications

To date, there have been few scientific studies on long-term survival in sarcoma patients. 

PROSa+ is the first study in Germany — and one of the first worldwide — to specifically examine the quality of life, care experiences, and unmet needs of long-term sarcoma survivors. The results will help improve care and aftercare for patients, tailoring it more closely to their needs.

How is PROSa+ carried out?

The study involves completing a questionnaire once. The questions cover various aspects, including well-being, quality of life, potential long-term effects, and general life circumstances. Some questions also refer to treatment experiences and satisfaction with care. 

There is also the option of providing more detailed feedback on experiences with the disease in an online interview.

Current status

The recruitment has started.

Funding 

PROSa+ is part of the German Cancer Aid (DKH) funding program ‘Long-term survival after cancer – data collection and data analysis’.