| Autor: |
Wilson R; Sarcoma Patient Advocacy Global Network (SPAGN), 61200 Woelfersheim, Germany., Reinke D; Division of Hematology/Oncology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI 48109, USA., van Oortmerssen G; Sarcoma Patient Advocacy Global Network (SPAGN), 61200 Woelfersheim, Germany., Gonzato O; Fondazione Paola Gonzato-Rete Sarcoma ETS, 33100 Udine, Italy., Ott G; Sarcoma Patient Advocacy Global Network (SPAGN), 61200 Woelfersheim, Germany., Raut CP; Division of Surgical Oncology, Brigham and Women's Hospital, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA 02115, USA., Guadagnolo BA; Division of Radiation Oncology, MD Anderson Cancer Center, Houston, TX 77030, USA., Haas RLM; Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands., Trent J; Department of Hematology Oncology, Sylvester Comprehensive Cancer Center, Miami, FL 33136, USA., Jones R; Sarcoma Unit, Institute of Cancer Research, Royal Marsden Hospital, London SW3 6JJ, UK., Pretorius L; Campaigning for Cancer, Randburg 2196, South Africa., Felser B; Sarcoma Foundation of America, Washington, DC 20036, USA., Basson M; Sock it to Sarcoma, Perth 6000, Australia., Schuster K; Sarcoma Patient Advocacy Global Network (SPAGN), 61200 Woelfersheim, Germany., Kasper B; Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, Germany. |
| Abstrakt: |
The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is identified as a major need. However, the terms 'specialist' or 'expert' center are rarely defined. Our objective is to offer a definition for patient advocates and a tool for healthcare providers to underpin improving the care of people with sarcoma. SPAGN developed a discussion paper for a workshop at the SPAGN 2023 Conference, attended by 75 delegates. A presentation to the Connective Tissue Oncology Society (CTOS) and further discussion led to this paper. Core Principles were identified that underlie specialist sarcoma care. The primary Principle is the multi-disciplinary team discussing every patient, at first diagnosis and during treatment. Principles for optimal sarcoma management include accurate diagnosis followed by safe, high-quality treatment, with curative intent. These Principles are supplemented by Features describing areas of healthcare, professional involvement, and service provision and identifying further research and development needs. These allow for variations because of national or local policies and budgets. We propose the term 'Sarcoma Intelligent Specialist Network' to recognize expertise wherever it is found in the world. This provides a base for further discussion and local refinement. |
