TU1: IMPROVING OUTCOMES FOR PATIENTS WITH SARCOMAS

Abstract

Improving outcomes is important for any patient with any disease. Defining the outcome measure will effect what steps need to be taken to improve it. In 2006 the National Institute of Clinical Excellence (NICE) published evidence based Guidance on measures to be taken in the UK to improve outcomes for patients with sarcomas. The Guidance established the following principles:

• That all patients with sarcomas must be treated by a recognised and properly constituted multi disciplinary team

• Early diagnosis is a key to better outcomes and clear referral pathways to diagnostic centres should be established for any patient with a suspected possible sarcoma

• All patients with a suspected diagnosis of a sarcoma must have the diagnosis confirmed by a recognised sarcoma specialist pathologist who participates in quality assurance.

• All centres treating sarcomas should collaborate in establishing treatment protocols and developing appropriate clinical trials for patients with sarcomas

• All definitive surgery for patients with sarcomas should be carried out at by appropriately trained sarcoma surgeons who regularly audit their results

• There should be a national registry of sarcoma cases with treatment and outcome data collected

• Complex cases such as pelvic, retroperitoneal and head and neck cases should be even more centralised to one or two centres

• All patients should have a keyworker assigned to them who would usually be a specialist nurse and who can act as a point of contact

• Effective follow up regimes need to be investigated

• Patients need access to reliable and relevant information at every step of their pathway

How this Guidance has been implemented and what implications this may have for other countries will be discussed.