The SPAEN Clinical Sarcoma Research Paper on "The challenge of sarcomas: the patient advocacy group perspective" has been written by Roger Wilson, SPAEN honorary president and a sarcoma patient advocate for more than 20 years. The patient advocacy agenda covers every aspect of cancer treatment and care. This inevitably means that this review covers almost everything that patient advocates are involved with, whether locally, nationally or across national borders. The review starts with a look at what advocacy is and closes with a short discussion on how sarcoma advocacy is structured internationally.
The five sections are:
(I) Clinical challenges,
(II) Challenges for healthcare systems,
(III) The cross-border challenges,
(IV) Keeping up to date,
The five priority challenges, one within each area above, are listed
respectively in order with the above:
(I) Earlier accurate diagnosis and primary treatment,
(II) Multi-Disciplinary Management,
(III) Cancer registration and patient data,
(IV) Quality of life and PROs,
(V) Patient involvement.
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The SPAEN Sarcoma Policy Paper “Sarcoma Patient Pathway Analysis and Recommendations for Service Development” was developed by SPAEN’s honorary president Roger Wilson, UK, co-chairs Markus Wartenberg and Estelle Lecointe-Artzner. It serves as a basic document for other European initiatives and provides sarcoma patient views on matters such as expert treatment centres, reference centres, rare cancer protocols, etc. The objective with this paper is to give a clear statement of what SPAEN expects sarcoma treatment to look like, how SPAEN expects service structures to develop to respond to patient needs, and how national and international referral practice should evolve.