An Audit of Activity and Pathways

The Management ofNeuroendocrine Tumours (NET)

in Merseyside and Cheshire

Jon Hayes, Ged Corcoran and Chris Holcombe Sept 2008

2NET Service or DGH

NET Service

DGH SurgeryEndocrinology Gen Medicine

NETClinician

NETClinician

NETClinician

NETClinician

FurtherInvestigations

Therapy

Biochem /Haematology

RadiologyImaging

RadionuclideImaging

Surgery

InterventionalRadiology

Chemotherapy(DXRT)

MedicalTreatment

RadionuclideTherapyI131 MIBG

or Y90 Dotatate

Immediate Post-Treatment Follow-up

Long Term Follow-up and Surveillance

NET MDT

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The NET Service is provided by a number of local clinicians who have developed a special interest in this rare but complex condition.

Incidence is around 2 per 100,000, but five year survival is around 70% so prevalence is high. Most patients require life-long follow-up and surveillance.

Because the service has developed gradually over several years, only an informal clinical pathway has existed up until now. Consequently, important aspects of the service are not adequately funded.

Some aspects of the clinical management are funded through PbR, but significant elements should be considered for collective and/or specialised commissioning.

Neuroendocrine tumours have not been subject to NICE Improving Outcomes Guidance.

Merseyside and Cheshire NET Service

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NETs are usually diagnosed after investigation for non-specific symptoms (eg nausea, vomiting and diarrhoea) by physicians and surgeons in hospitals across the cancer network.

Most carcinoid tumours arise in the appendix or small bowel. 269 out of 396 patients on the local NET database have carcinoid tumours (68%).

Insulinomas, gastrinomas, phaeochromocytomas, glucogonomas, VIPomas and somatostatinomas account for the remaining 32%.

NETs are associated with genetic syndromes such as Multiple Endocrine Neoplasia (MEN1 and 2), but most are sporadic isolated tumours.

At the time of onward referral to the NET Service, many patients may already have had a laparotomy or biopsy to confirm the diagnosis.

Diagnosis and Onward Referral

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Site of primary:

Referrals

Small Bowel 18%

Appendix 14%

Pancreas 12%

Unknown 10%

Colon 2%

Thyroid 2%

Other 42%

Source: NET database, Jan 2006 – May 2008.

Jan 2006 – end May 2008 (29 months): New patients = 162 (67 per year)

Known deaths = 66 (27 per year)

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Site of metastases:

Metastatic Disease

Liver 76%

Lymph 12%

Mesentery 7%

Bone 7%

Ovary 2%

Other 6%Source: NET database, Jan 2006 – May 2008.

Total exceeds 100% as some patients have multiple sites recorded.

53% of patients have metastatic disease.

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Referrals are made from DGHs to several clinicians with a special interest in NETs at the Royal Liverpool University Hospital and University Hospital Aintree.

Referrals are received from trusts within the Merseyside and Cheshire Cancer Network, North Wales and the Isle of Man. Less frequent referrals are received from Lancashire, South Cumbria, Manchester and the rest of Britain.

Patients are seen by the specialist clinicians in their outpatient clinics and then their cases are discussed at the NET Multidisciplinary Team Meeting (MDT).

The NET MDT has developed in a gradual manner over several years and has met fortnightly since 2007. The meeting is chaired by Professor Vinjamuri, Consultant in Nuclear Medicine.

The MDT has not had the benefit of an Oncologist (medical/clinical) for two years. It is likely that the MDT may need to be held weekly in the near future.

Assessment by NET Clinicians

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Attendance at MDT by NET Clinicians

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Once referred into the NET Service, patients may require further diagnostic tests to assess the nature and extent of their disease.

Biochemestry / Haematology– Full blood and urine endocrine profile - FBC

– Renal function - Hepatic Function

Imaging– Chest X-Ray

– Contrast enhanced CT chest and abdomen

– MR

Radionuclide Imaging– I123 MIBG +/- Single Photon Emission Computed Tomography

– In111 Octreotide +/- SPECT

Additional Investigations

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Radionuclide Imaging

Source: Peer Review Document, Dept of Nuclear Medicine, RLBUHT, 30 June 2008

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Hormone Therapy– Somatostatin analogues (12% of patients)– Patients receive monthly injections in the community co-ordinated by

NET CNSsChemotherapy (2%)

– Co-ordinated by the most appropriate oncology centre for the patient (CCO, Christie, Glan Clwyd, Preston)

Interventional Radiology– Radio-Frequency Ablation (1%)– Chemo-Embolisation (<1%)

Radionuclide Therapies– I131 MIBG (5%)– Y90 Dotatate (8%)

Figures in parentheses show proportion of patients (referred between Jan 2006 and May 2008) receiving these treatments recorded on the NET database.

Specialist Non-Surgical Therapies

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Surgery

Source: NET database, Jan 2006 – May 2008.

52% of patients have surgery. Location:

Right Hemicolectomy 21%

Appendicectomy 20%

Small Bowel Resection 18%

Whipples/Pancreatectomy 14%

Liver Resection 6%

Other surgery 21%

Total 100%

UHA 21%

RLUH 14%

Other 29%

Not recorded 36%

Total 100%

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Radionuclide Therapies

Source: Peer Review Document, Dept of Nuclear Medicine, RLBUHT, 30 June 2008

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Patients are seen by the responsible clinician in outpatient clinics at the Royal and Aintree.

On-going surveillance and management of recurrence

Recurrence is common in this group of patients and follow-up continues for a number of years. Some patients are returned to their original referring network for surveillance. More locally, patients receive at least annual checks by NET clinicians.

Post-Treatment Follow-up

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1. Peer review measures stipulate minimum attendance at 50% of meetings for core MDT members.

2. Lack of CCO input to MDT needs to be addressed.

3. What investigations and treatments can be undertaken by referring hospital?

4. Trials recruitment: Is it as comprehensive as we would like?

5. What are the indications for specialist investigations and therapies?

6. Need to clarify which parts of the pathway are funded and how. Need to prepare a case for collective/specialised commissioners to consider regarding the unfunded elements.

7. What is the scope for developing the service beyond its current boundaries?

8. What is the role of PET-CT in NETs?

For Discussion