What is a sarcoma “specialist centre”?
Management of sarcomas in specialist centres is associated with significant benefits for patients. Amongst those who have experience with sarcoma, it is undisputed that sarcoma should be treated by experts or in specialist centres, although evidence is limited.
No clear criteria
Despite broad use, the terms ‘specialist centre’ or ‘expert centre’ are rarely defined. Without clear criteria and definition, it is difficult for patients and families to understand the level of expert care they can expect for management of their sarcoma from a given centre. The Sarcoma Patient Advocacy Global Network (SPAGN), together with expert sarcoma doctors, has endeavoured to identify features and principles for optimal sarcoma management as well as an appropriate term for a system (“specialist intelligent network”) that could be applied across the world. The objective is to offer patients, advocates, specialist professionals and healthcare providers a tool which informs and underpins their plans to improve the care of people with sarcoma.
Development of discussion paper
SPAGN developed a discussion paper, which provided the focus for a workshop at the SPAGN 2023 Annual Conference, which was attended by 75 delegates. This was followed up by a position paper, which puts forward relevant features as well as a new approach. A presentation to the Connective Tissue Oncology Society (CTOS) and further discussion led to a paper.
This paper is called "What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer" and has been published May 13, 2024 in the peer-reviewed publication "Cancers".
It can be accessed here: https://www.mdpi.com/2072-6694/16/10/1857
Core principles and Features for sarcoma management
This paper sets forth Core Principles that should underlie all sarcoma care. The primary principle is the multi-disciplinary team approach that includes a multidisciplinary review and discussion of everypatient, at first diagnosis and during treatment. Additional Core Principles for optimal sarcoma management include an accurate diagnosis followed by safe, high-quality treatment, with curative intent (including treatment on a clinical trial if appropriate) and delivered as close to home as practicable.
These Core Principles are supplemented by Features, which describe areas of healthcare, professional involvement, and patient service provision. Features include the provision of adequate imaging techniques, access to relevant disciplines to decide on therapy strategies in a multidisciplinary manner including sarcoma pathology, surgical, radiation, pediatric and medical oncology with expertise in clinical trials. All disciplines should be engaged in continuous medical education and participation in relevant congresses to have access to the latest information. Minimum standard is provided to allow for national or local policies and budgets.
The proposed presentation puts forward the term ‘specialist intelligent network’ for global use as a commonly accepted term. The term ‘network’ indicates that provision does not have to be at a single-site.
Checklist
Self-accreditation is the proposed route forward. The Network Standard is composed of the Core Principles and Features mentioned above. They are summarized in a checklist (see below), which could be used for a self-inspection process. It is suggested that self-inspection is performed by the clinical team working with representatives of their patients.