NICE guideline focuses on care for patients with cancer of unknown primary

In collaboration with Adfero

The National Institute for Health and Clinical Excellence (NICE) has published a new guideline which should help to improve care for thousands of patients with advanced cancer that has spread from an unknown primary location.

NICE has recommended a raft of measures to tackle the current inequality in care received by patients with so-called cancer of unknown primary (CUP) compared with those being treated for a site-specific cancer.

Professor Peter Littlejohns, NICE clinical and public health director, said that CUP - which affects over 10,000 people each year in England and Wales - is a "neglected" cancer, as little is known about the types of treatment that will work best for individual patients.

"They also tend to miss out on medical and other benefits that are given to patients with a specific type of cancer because of a lack of information, understanding and specialised services," the professor revealed.

"It is important that patients with this form of cancer receive the same level of care that other cancer patients experience. This guideline seeks to provide a consistent, national approach to the diagnosis and management of this condition."

One of the new measures is that, as of yesterday (July 26th), specialist teams at local, regional and national levels will focus on improving the care and treatment of patients with CUP.

Hospitals with a cancer centre or unit will be expected to set up specialist CUP teams to support and manage patient care until they can be referred to the most appropriate consultant, referred for palliative care or diagnosed with confirmed CUP.

Under the guidelines, inpatients should be seen by a CUP team member by the end of the next working day after referral, while outpatients should be seen within two weeks.

Each patient should be allocated a CUP specialist nurse or key worker and decision aids should be developed to help patients and carers make informed decisions about diagnostic tests and treatments.

The guidance also provides advice for those involved in the diagnosis and care of patients with CUP.

It is supported by the National Cancer Peer Review Programme in England, which is studying the recommendations with a view to improving services.

Dr Andrew Fowell, chair of the Guideline Development Group and a Macmillan consultant in palliative medicine at Eryri Hospital in north Wales, said that specialist teams can provide "great support for cancer patients".

"We expect some oncologists to become CUP specialists, alongside their more conventional site-specific activities," he revealed.

"They will be supported by CUP nurse specialists, palliative care physicians and other core diagnostic staff. These teams should be supported by their hospitals to ensure they are given sufficient time in their job plans for this specialist role and any training that may be needed."

Hilary Tovey, policy manager at Cancer Research UK, said: "It's great to see NICE making strong recommendations to improve care for this group of patients.

"We know that being diagnosed with a less common cancer can sometimes be very difficult for patients to cope with. Those with an unknown primary cancer site have specific needs because of all the uncertainties related to their condition.

"We hope these guidelines will help get patients the information and support they need."