COSA:NETs guidelines/Background

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Background

To facilitate a strategic and collaborative approach to diagnosis and management of gastroenteropancreatic neuroendocrine tumours (GEP NETs), a group of uncommon and clinically heterogenous diseases, the Clinical Oncology Society of Australia (COSA) has formed a NETs interest group, currently chaired by Dr Yu Jo Chua. COSA, in partnership with the Australian and New Zealand Hepatic, Pancreatic & Biliary Association (ANZHPBA), the Australasian Gastro-Intestinal Trials Group (AGITG) and the Australian and New Zealand Society of Nuclear Medicine (ANZSNM), convened the first Australian GEP NETs consensus workshop in July 2008.

The workshop identified the need for the development and publication of Australasian guidelines for the clinical management of GEP NETs. Given the limited availability of high level randomised trials evidence in these diseases, it was agreed to develop recommendations based on currently available international guidelines, but ensuring relevance and appropriateness to local practice.

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Development of draft guidelines

COSA convened a second Australasian NETs Consensus Guidelines Workshop in Melbourne on 21 August 2009 to progress development of consensus guidelines for the diagnosis and management of GEP NETs in Australia and New Zealand. The participants were clinicians considered to be key contributors to the management of NETs from across Australia and New Zealand, representing all relevant disciplines and specialist groups. Professor David Goldstein facilitated the workshop.

In the lead up to this workshop, working groups of clinicians were established for each specialty area of diagnosis and management, to review existing evidence and/or current practice and draft guidelines relevant to their area of expertise. At the workshop the chair of each working group presented the group’s recommendations for consideration of, and discussion by the wider group, resulting in the following expert guidelines.

Each of the working groups has subsequently revised the guidelines to address issues identified by, and the consensus recommendations of, workshop participants.

This workshop was supported by unrestricted education grants from Novartis Pharmaceuticals Australia and Ipsen Pty Ltd. Pharmaceutical industry representatives were not present at the workshop and will not have any editorial input into development of the guidelines.

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About these guidelines

The scope of the guidelines is well- to poorly-differentiated gastroenteropancreatic neuroendocrine tumours (GEP NETs).

The objective is to define the minimum standard of care for Australian and New Zealand GEP NETs patients, as well as to raise awareness as to the management options that should be considered when formulating a multidisciplinary care plan for these patients.

Because of the limited availability of high-level randomised trials evidence inherent to uncommon diseases, some of the recommendations may be based on the opinion of local experts and other published international consensus guidelines.

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Key principles underpinning the guidelines

  • These recommendations are a general guide highlighting available management options. Care for individual patients should be personalised in consultation with a multidisciplinary team. Multidisciplinary teams (MDTs) do not have to be limited to a single institution, as has been demonstrated by development of ‘state-wide’ MDTs in South Australia and Western Australia.
  • Patients with GEP NETs may have a long clinical course, and may be relatively well or minimally symptomatic for a significant portion of time. Thus, the guidelines should acknowledge that consideration of side effects may be more relevant for these patients. It is also important to remind clinicians to consider the psychological impact of certain treatments (or recommending no treatment) for patients who are asymptomatic.

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Recommendation of therapies that are not funded

In some cases the guidelines may recommend diagnostic or management therapies that are either not approved for funding or for which there is not (and may never be) an evidence base. Where a therapy is not funded or not currently available in Australia or New Zealand, this should be acknowledged in the guidelines – but this does not preclude recommendation of a therapy as a treatment option.

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Definitions

In these guidelines, the following definitions are used in describing NETs:

  • Non-functioning Tumours: Those tumours without secretory symptoms or the 'carcinoid syndrome'.
  • Functioning Tumours: Tumours associated with secretory symptoms or the 'carcinoid syndrome', not including other tumour-related non-secretory symptoms such as mass effect, pain or bowel obstruction, and irrespective of serum chromogranin A and urine 5HIAA levels.

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