What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer

Author:

Wilson Roger1ORCID,Reinke Denise2ORCID,van Oortmerssen Gerard1ORCID,Gonzato Ornella3ORCID,Ott Gabriele1,Raut Chandrajit P.4,Guadagnolo B. Ashleigh5,Haas Rick L. M.6ORCID,Trent Jonathan7ORCID,Jones Robin8ORCID,Pretorius Lauren9,Felser Brandi10,Basson Mandy11,Schuster Kathrin1,Kasper Bernd12ORCID

Affiliation:

1. Sarcoma Patient Advocacy Global Network (SPAGN), 61200 Woelfersheim, Germany

2. Division of Hematology/Oncology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI 48109, USA

3. Fondazione Paola Gonzato-Rete Sarcoma ETS, 33100 Udine, Italy

4. Division of Surgical Oncology, Brigham and Women’s Hospital, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA 02115, USA

5. Division of Radiation Oncology, MD Anderson Cancer Center, Houston, TX 77030, USA

6. Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands

7. Department of Hematology Oncology, Sylvester Comprehensive Cancer Center, Miami, FL 33136, USA

8. Sarcoma Unit, Institute of Cancer Research, Royal Marsden Hospital, London SW3 6JJ, UK

9. Campaigning for Cancer, Randburg 2196, South Africa

10. Sarcoma Foundation of America, Washington, DC 20036, USA

11. Sock it to Sarcoma, Perth 6000, Australia

12. Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, Germany

Abstract

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.

Funder

SPAGN

Publisher

MDPI AG

Reference33 articles.

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2. Incidence and survival of soft tissue sarcoma in England between 2013 and 2017, an analysis from the National Cancer Registration and Analysis Service;Bacon;Int. J. Cancer,2023

3. (2024, April 09). American Cancer Society Reporting SEER Data. Available online: https://www.cancer.org/cancer/types/soft-tissue-sarcoma/detection-diagnosis-staging/survival-rates.html.

4. (2024, March 14). ESMO Sarcoma Guidelines. Available online: https://www.esmo.org/guidelines/guidelines-by-topic/sarcoma-and-gist.

5. (2024, March 14). ICR Sarcoma Accelerator Project. Available online: https://www.icr.ac.uk/our-research/centres-and-collaborations/the-royal-marsden-partnerships/joint-sarcoma-research-centre/sarcoma-accelerator-consortium.

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