New measures to help patients with mystery cancers
pharmafile | July 27, 2010 | News story | | CUP, Cancer, NHS, NICE
Patients whose cancer has spread to other parts of the body from an unknown primary location are to be given improved care.
NICE has just published new guidance to specialist cancer teams on how to improve services for these patients, who frequently receive lower standards of care than patients whose primary cancer site is known.
An estimated 10,000 people are diagnosed with cancer of unknown primary (CUP) every year in England and Wales, but lose out compared to other cancer patients because they do not fit into a well defined and understood field, such as breast, lung or prostate cancer.
The new guideline aims to help the NHS provide effective and tailored care for patients with CUP. Central to this is the development of specialised teams at local, regional and national level.
Professor Peter Littlejohns, NICE clinical and public health director, said: “[cancer of unknown primary] is very much a neglected cancer – patients generally have a poor prognosis and little is known about which types of treatment work best for them. 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.
“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.”
The key measures
· All hospitals with a cancer centre or unit should establish specialist CUP teams to support and manage the care of patients with this diagnosis. This team will be responsible for guiding patients’ care until they are referred to a consultant with expertise in a particular type of cancer, referred for palliative care alone, or are finally diagnosed with confirmed CUP.
· Specialist CUP multi disciplinary teams should be set up at network level to review the treatment and care of patients with confirmed CUP, or with complex diagnostic issues.
· Every cancer network should establish a group responsible for managing all stages of CUP.
Dr David Brooks, GDG member and Macmillan consultant in palliative medicine at Chesterfield Royal Hospital, helped to establish a specialist CUP team earlier this year. He said: “Our unknown primary team consists of existing members of the upper GI cancer and palliative care teams. We see one or two patients per week in a cancer unit that covers a population of just over 300,000 so the workload is not onerous.
“It is early days but we are already seeing benefits in both providing early supportive and palliative care, more effective targeting of investigations to confirm treatable disease and, in those who are not fit for treatment, stopping inappropriate tests and refocusing care towards arranging appropriate support and palliation to enable the patient to get home.”
The guideline sets out ways in which patients’ experiences should be improved, particularly through the creation of these local CUP teams, including:
· Inpatients should be seen by a dedicated member of the CUP team by the end of the next working day after referral.
· Outpatients should be seen within two weeks.
· Patients should be given access to an identified CUP specialist nurse or key worker when this type of cancer is diagnosed.
· Decision aids should be developed to help patients and their carers make informed decisions about continuing diagnostic investigations and using anti-cancer treatment after CUP has been diagnosed.
Guidance: http://www.nice.org.uk/guidance/index.jsp?action=byID&o=13044
Andrew McConaghie
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