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Medical
Draft Cancer of Unknown Primary Measures for the Manual of Cancer Services
A draft version of the Cancer of Unknown Primary Measures have been issued for consultation by NCAT (Start Date 21st December 2011 Close Date: 14th March 2012). The measures, based on the NICE Guideline of July 2010, are used by the National Cancer Peer Review Programme as part of the assessment of cancer services. They will help also to provide a ready specification for commissioning of cancer services within the NHS. They can be found on this page under “measures out for consultation”. [Posted Dec 11]
Evaluating the development of a pathway for patients presenting with CUP
A useful study has been undertaken at Chesterfield Royal Hospital in conjunction with Sheffield University and funded by Macmillan Cancer Support. The study looked at the development of a new pathway for CUP patients following the introduction of the NICE Guideline in July 2010. Data were collected on two cohorts of patients. The first related to the pre-pathway phase, and numbered 50. The second was from the pathway implementation phase, and numbered 38. The study confirmed the importance to patients of reducing delays, uncertainties and lack of continuity. The study appears to indicate that instituting a CUP pathway in a district general hospital has the potential to contain the length of time taken for investigation of CUP. [Posted Sep 11]
Acute Oncology (distilled from Macmillan Cancer Support /July 2011)
Background
The National Confidential Enquiry into Patient Outcomes and Death (NCEPOD) Report (2008) raised significant concerns regarding the safety and quality of chemotherapy services. In response to this the National Chemotherapy Advisory Group (NCAG) Report (2009) highlighted the need to improve a number of areas including the provision of emergency care for cancer patients who develop complications following chemotherapy, but also for patients admitted suffering from consequences of their cancer. It recommends that all hospitals with an Accident and Emergency (A&E) department establish an acute oncology team (AOT), combining staff from A&E departments, acute medicine and oncology to coordinate the service in that hospital.
A further NCEPOD Report (2009) highlighted issues over the lack of ability of health care professionals and teams to identify patients approaching end of life (EOL) and inadequate involvement of palliative care teams and deficits in end of life care patient management. This often resulted in admission when it was inappropriate. Numerous reports have underlined the fact that many patients nearing the end of life are admitted inappropriately and may die in hospital when they would rather die elsewhere.
The final Acute Oncology Measures were published in April 2011 and for the purpose of the cancer quality measures and peer review, acute oncology will be reviewed as a separate activity, integrated across each cancer network in England. Whilst the national guidance has been developed in England, the clinical issues are the same across all four nations.
Aims of an Acute Oncology Team
- Better care of patients presenting with acute complications of their cancer treatment
- Better care of patients presenting with emergencies caused by the disease process itself, whether the primary site is known, unknown or presumed
- Early identification and appropriate care of patients approaching EOL
References:
National Confidential Enquiry into Patient Outcomes and Death (2008) For better, for worse? A review of the care of patients who died within 30 days of receiving systemic anti-cancer therapy.
National Chemotherapy Advisory Group (NCAG) Report (2009) Chemotherapy Services in England: Ensuring Quality and Safety.
National Confidential Enquiry into Patient Outcomes and Death (2009) ‘Care to the end? A review of the care of patients who died within hospital within 4 days of admission’
National Cancer Action Team (2011) Acute Oncology - including metastatic spinal cord compression measures.
[Posted Sep 11]
Paper accepted for publication
A paper based on our last conference has been accepted for publication in the prestigious Annals of Oncology. The title of the article is: "Cancer of Unknown Primary: Progress in the Search for Improved and Rapid Diagnosis Leading Toward Superior Patient Outcomes". See the abstract here. [Posted Jun 11]
Research on how CUP data are collected by hospitals and presented by cancer registries
Clear definitions and good data collection underpin the ability to undertake high quality research and audit. Without this it is impossible to improve the management of, and outcome for, CUP patients.
A recent study by Kathie Binysh, Richard Osborne and John Symons - Capturing Cancer of Unknown Primary (CUP) Data: Known Unknowns or Unknown Unknowns? - was presented at the National Cancer Intelligence Network Conference in mid June 2011.
The aim of the study was to understand how CUP data are recorded presently by Cancer registries. The study’s objectives sought to establish (1) the completeness and accuracy of the data (2) whether there is consistency of practice between registries (3) the extent of analysis and data presentation and (4) how the quality of data collection might be improved in the future.
Replies were received from eight out of the eleven registries in the UK. In short, it is likely that CUP is under-reported and that there is a lack of consistency in collating data. The more specific findings below are likely to be of interest, particularly to researchers and clinicians:
- The WHO cancer code C80 (Malignant neoplasm without specification of site) appears to be the most commonly used code within the usual range of C77-C80.
- Registries were asked the total numbers and proportion of cancers of unknown primary they registered during 2008. This varied between registries from 0.7% to 4.0%. This variation could be due to a difference in the incidence of the disease but could also result from differences in coding practice.
- The incidence of cancer of unknown primary appears to be falling. This might be due to real changes in the incidence but could also reflect improvements in identifying the primary site, such as better access to diagnostics; the effectiveness of MDT working or changes in coding practice. Anecdotal evidence suggests that CUP patients reviewed at MDTs are often classified as having a probable primary tumour which corresponds to the site-specialty of the MDT. While this is understandable, and indeed may be correct in some cases, this approach involves unreasonable assumptions, as well as being non-uniform (different MDTs will have different “thresholds” for attributing a probable site-specific diagnosis).
- The supporting evidence used to come to an unknown primary coding included death certificate, pathology, MDT records and clinical notes. Some registries mentioned talking to clinicians, both within secondary care and primary care. One registry mentioned that it would discuss the classification with the coding department in the reporting hospital.
- Distinguishing between unknown primaries and tumours that may be a metastasis from an existing tumour registration, showed that the greatest emphasis was placed on the morphology. If there was an existing primary with the same morphology then it was assumed that it was a metastasis from the primary tumour. Basal cell carcinomas were excluded from this rule. If there was no morphology or there was doubt, then one registry stated that they would register a second tumour. Other registries also talked about discussion with pathologists or clinicians involved with the case before coming to a decision. [Posted Jun 11]
National recording of CUP statistics
In recent months we have been discussing the presentation of CUP statistics with the National Cancer Intelligence Network (NCIN) and Cancer Research UK (CRUK). Very significant changes have been agreed which will give CUP greater prominence. This is important for raising awareness that translates into possibilities of research funding and patient benefit. Dr Richard Osborne of our Advisory Board describes this news as: "a huge leap forward in CUP care."
On 20th April 2011 CRUK published their 2008 CancerStats Report which includes CUP. See here for details of CUP incidence and mortality.
CRUK plan also to have a new CUP section on their CancerStats website in due course. There, they will include the graphs for CUP incidence and mortality.
NCIN and CRUK will be publishing shortly a collaborative data briefing on CUP. This will look at CUP in more detail, examining how the incidence varies by age, by sex, by ICD-10 site code, both in the latest years available and over time. This collaborative work will help to explore any variation in the cancer registration processes to try to make the use of data recorded as “C77-C80” as “CUP” equitable across the country, and as clinically relevant as is possible. [Posted May 11]
Research looking at the familial associations of CUP
The Journal of Clinical Oncology (May 2011) has an interesting article - the abstract is here. The research suggests a familial association of CUP with kidney, lung, and colorectal cancers. [Posted May 11]
Oncology magazine
Oncology – a magazine with a wide distribution amongst oncologists carries, in the latest edition, a comprehensive article about CUP by Dr Richard Osborne with a half page advert for Jo’s friends alongside. We are trying to ensure that all oncologists in the UK are aware of our existence and can point patients and carers towards our services. [Posted Mar 11]
Referral Guideline
With other health organisations, we have encouraged NICE to upgrade the cancer referral guidelines for GPs. Early diagnosis is the key to effective treatment. NICE have decided to embark on a revised Guideline which is good news. Jo’s friends is registered as a stakeholder in the process which means we get a chance to comment at various stages as the Guidelines are researched and written. [Posted Mar 11]
Improving outcomes - a strategy for cancer
The Government published this document on 12 Jan. It refreshes the Cancer Reform Strategy directing NHS cancer services. It aims to bring cancer outcomes up to the European average through earlier diagnosis. [Posted Feb 11]
Living with cancer research
Warwick Medical School Clinical Trials Unit would like to invite UK patients to take part in an innovative study to explore what it is like living with cancer. They want to do it through words and pictures (photography). They will interview you and, if required, lend you a camera. For further details contact C.Balmer@warwick.ac.uk or ring her on 02476 151179. [Posted Jan 11]
Publication
The September edition of Cancer Nursing Practice carries an article by James & Symons on the implementation of the new NICE Guideline for CUP. [Posted Oct 10]
CUP-One update
The study recruitment has now begun to take off with a significant increase in the recruitment figures over the last 2 months. With additional sites opening imminently and new sites expressing interest in the study enthusiasm for the study remains high and it is anticipated that CUP-One will meet the projected recruitment within the anticipated timelines.
31 patients have been recruited to date from the following centres: Aberdeen Royal Infirmary, Beatson West Of Scotland Cancer Centre; Hammersmith Hospital; Kent Oncology Centre; King Edward VII Hospital, Windsor; Peterborough Hospital; Wexham Park Hospital; Royal Marsden Hospital; Doncaster Royal Infirmary; Weston Park Hospital, Sheffield. New centres are opening shortly. [Posted Oct 10]
NICE Guideline for CUP
The NICE Guideline for the management & treatment of CUP was introduced on 26 July 2010. This is the most important thing ever to happen for CUP in England & Wales (NICE does not cover Scotland and N. Ireland but it is likely that the other national authorities will be informed by this guidance). Of course, we have to recognise that this is Guidance and not mandatory but initial reactions to the recommendations are encouraging. Jo’s friends is a Stakeholder and the Director has been a member of the Guideline Development Group since it started work in 2008.
There will be costs involved in the implementation of the Guideline, but there should be savings from the more rational management of patients passing through the system with improved pathways for investigations and decreased length of hospital stays. In essence it is thought likely that implementing the Guideline will be cost neutral. The Coalition Government have committed to achieving “cancer survival rates among the best in the world” by 2015. Survival rates are presently amongst the worst in Western Europe but the introduction of the CUP Guideline, if implemented, is an important step on the journey to achieve the Government's aspiration.
Until now a patient presenting with CUP has suffered from ad hoc approaches. He or she has often “bounced” between site-specific Multi Disciplinary Teams as each tries to find a primary site of the cancer with different tests. Expertise should now become more focused; and patient support is clearly defined in this evidence-based approach to the management and treatment of CUP. The Guideline is very comprehensive and can be found here.
Highlights of the Guideline. We highlight some key points from the patient perspective:
- The diagnosis is defined in three distinct phases:
- Malignancy of undefined primary origin. Metastatic malignancy without a probable primary site identified on the basis of a limited number of tests.
- Provisional carcinoma of unknown primary (provisional CUP). Metastatic epithelial or neuro-endocrine malignancy identified on the basis of histology/cytology, with no primary detected after an initial screen of investigations.
- Confirmed carcinoma of unknown primary (confirmed CUP). No primary detected despite further specialised tests and specialist reviews.
- Every hospital with a cancer centre or unit should establish a CUP team, and ensure that patients have access to the team when malignancy of undefined primary origin (MUO) is diagnosed.
- The CUP team should consist of an oncologist, a palliative care physician and a CUP specialist nurse or key worker as a minimum.
- The CUP specialist nurse or key worker should:
- take a major role in co-ordinating the patient’s care in line with the guideline
- liaise with the patient’s GP and other community support services
- ensure that patient and carers can get information, advice and support about diagnosis, treatment, palliative care, spiritual and psychosocial concerns
- meet with the patient in the early stages of the pathway and keep in close contact with the patient regularly by mutual agreement
- be an advocate for the patient at CUP team meetings.
- The CUP team should take responsibility for ensuring that a management plan exists which includes:
- appropriate investigations
- symptom control
- access to psychological support
- providing information.
- A CUP network multidisciplinary team (MDT) should be set up to review the treatment and care of patients with confirmed CUP, or with MUO or provisional CUP with complex diagnostic or treatment issues.
- Every cancer network should establish a network site-specific group to define and oversee policies for managing CUP. [Posted Jul 10]
For NICE press release with Q&A (26 Jul 10) see these documents:
CUP Guideline NICE Press Release for 26 July 2010.pdf
Cancer of Unknown Primary Guideline Q&A - 26 July 2010.pdf
and for a short published review by James & Symons click here.
CUP-One Trial
Trial centres are now open for the start of this important multi-centre, Phase II trial which is being lead by Dr Harpreet Wasan – a Member of our Advisory Board.
The study, of which Jo’s friends is a stakeholder, is in two parts: the aim of the first (translational) part is to validate prospectively new tools in diagnosis (including molecular profiling, metabonomics of blood and urine for response and toxicity prediction and a proposed immunohistochemistry classifier). The hope is that, in the future, scientists can find a diagnostic indicator of the primary site simply, rather than subjecting the patient to a whole barrage of investigations.
Patients in whom a primary site is not identified can then be entered into the second (clinical) part of the trial. The trial may help in the future with selecting the best chemotherapy for patients with CUP. This part of the trial aims to establish the efficacy of the ECX chemo regimen (ECX stands for the drugs: Epirubicin, Cisplatin and Capecitabine) with and without Vandetanib (an inhibitor of different intracellular signalling pathways involved in tumour growth, progression, and angiogenesis). The treatment will last initially for 3 months and there will be subsequent monitoring. Patients can withdraw from the trial at any time without giving a reason.
Overall, this study should allow a more logical framework to be derived, both clinically and biologically, as to how highly metastatic cancers may be efficiently and economically investigated and managed in the future. It will be some years before the findings are available from this trial.
Trial centres that are now open are within hospitals in: Hammersmith, Glasgow, Aberdeen, Manchester, Doncaster, Sheffield, Slough, Peterborough, Poole, Kent. More details of the trial are shown here.
[Posted Jul 10]
NHS White Paper - Biggest changes since the NHS began
The Department of Health published the NHS White Paper, Equity and Excellence: liberating the NHS on 12 July 2010. Key points include:
- Putting patients first. “No decision about me, without me” will be the guiding principle for patient involvement
- The use of patient experience data and clinical audit will be expanded, giving patients greater information on which to make choices
- Choice will be extended to cover treatment options, choice of team and choice of GP
- Improving healthcare outcomes. A consultation on an outcomes framework will be launched shortly setting out quality benchmarks against which services should be commissioned and delivered
- Local authorities will provide local accountability and will be charged with ensuring greater integration across health and social care. PCTs and SHAs will be abolished
- All trusts will become foundation trusts
- GP consortia will assume the statutory responsibility for commissioning
- Cancer Drug Fund (Interim measure) to operate from April 2011 to support patients to get the drugs their doctors recommend
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Management costs will be reduced by 45%, releasing £1 billion for patient care.[Posted Jul 10]
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Your site is so great. I have a hard road ahead but feel calmer now that I've started a targeted chemo treatment. I fully understand the importance of your website and help.
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Events
The Wilson family present money raised in memory of Tracy. Photo: The Mansfield Chad and Hucknall Dispatch.
