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Ultrarare Sarcomas and New Sarcoma Subtypes

(P 455) DEVELOPMENT OF PATIENT-CENTERED INFORMATION MATERIAL ON RADIATION-INDUCED SARCOMA: QUALITATIVE RESULTS FROM FOCUS GROUPS OF THE TETRIS-PROJECT

    Author(s)

  • Melissa Harbrücker, MD (she/her/hers)

    Resident
    Sarcoma Unit, Department of Surgery, University Medical Centre Mannheim, Medical Faculty Mannheim, Heidelberg University
    Mannheim, Baden-Wurttemberg, Germany

    • Co-Author(s)

  • Nicolas Scheuplein, Dr. (he/him/his)

    Medical Writer
    Cancer Information Service, German Cancer Research Center (DKFZ)
    Heidelberg, Baden-Wurttemberg, Germany

  • Ww

    Winja weber, Dr.

    Cancer Information Service, German Cancer Research Center (DKFZ)
    Heidelberg, Baden-Wurttemberg, Germany

  • Katharina Bähr, MSc (she/her/hers)

    Research Scientist
    Cancer Information Service, German Cancer Research Center (DKFZ)
    Heidelberg, Baden-Wurttemberg, Germany

  • SW

    Susanne Weg-Remers, MD

    Cancer Information Service, German Cancer Research Center (DKFZ)
    Heidelberg, Baden-Wurttemberg, Germany

  • Jens Jakob, MD (he/him/his)

    Consultant Sarcoma Surgeon
    Sarcoma Unit, Department of Surgery, University Medical Centre Mannheim, Medical Faculty Mannheim, Heidelberg University
    Mannheim, Baden-Wurttemberg, Germany

  • Stefan Fröhling, M.D. (he/him/his)

    Division Head
    German Cancer Research Center
    Heidelberg, Baden-Wurttemberg, Germany

  • MH

    Madelaine Hettler, MD

    Sarcoma unit, Department of Surgery, University Medical Center and Medical Faculty Mannheim, University of Heidelberg, Mannheim, Germany.
    Mannheim, Baden-Wurttemberg, Germany

  • JG

    Julia Geulen, MD

    Cancer Information Service, German Cancer Research Center (DKFZ)
    Heidelberg, Baden-Wurttemberg, Germany

Objective: Radiation-induced sarcoma (RIS) is a rare but serious late sequela of cancer radiotherapy. The disease is associated with uncertainty, limited treatment options, and poor prognosis. Currently, there is a significant lack of reliable German-language patient information. The InfoSiS sub-study, conducted within the multicenter “TumorEcosystems in Radiation-Induced Sarcoma (TETRIS)”- project, aims to systematically identify patients’ and relatives’ information needs to guide development of patient-centered materials that foster health literacy and shared decision-making.

Methods: The Cancer Information Service of the German Cancer Research Center used formative evaluation to conduct three online focus groups with 13 participants (9 RIS patients, 4 relatives). Discussions were guided by a semi-structured protocol. Standardized questionnaires captured sociodemographic, disease-related, and subjective health literacy data. Qualitative content analysis was performed on verbatim transcripts. Recruitment was supported by Sarcoma Center Mannheim and German Sarcoma Foundation.

Results: Focus groups revealed substantial information deficits. Participants frequently reported inconsistent treatment recommendations, inadequate, often unempathetic medical communication, and difficulties obtaining reliable information. Some felt left alone with key therapy decisions. Participants agreed on the urgent need for trustworthy digital information, such as a website. Key content requirements included information on RIS, therapy options, and psycho-oncological support. Awareness of resources such as specialized sarcoma centers and the German Sarcoma Foundation was notably low.

Conclusion: There is a clear and urgent demand for reliable, patient-oriented informational material on rare cancer entities such as RIS, designed to strengthen health literacy and facilitate shared decision-making. Following the formative phase, the developed material will undergo summative evaluation by the target group before public release. Projects like InfoSiS and TETRIS are therefore highly relevant for providing the best possible support to affected patients and their families.