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NATIONAL CANCER INTELLIGENCE NETWORK CANCER OUTCOMES CONFERENCE
12TH TO 14TH JUNE 2013 HILTON BRIGHTON METROPOLE
NCIN co-ordinates the collection, analysis and use of the cancer information from the eight regional
registration offices, which receive date on cancer patients from the local MDTs. In April 2013 this
was integrated to become the National Cancer Registration Service (NCRS).
The Cancer Outcomes Conference focussed on the questions:
‘Does what we know change what we do?’
‘What can we learn from others?’
‘What can others learn from us?’
DAY 1
Workshop on Patient Outcomes and Policy
Di Riley, Associate Director, Clinical Outcomes Programme, NCIN.
How can NCIN information influence commissioning?
*Understanding the various needs of the community. Poole and other similar places differ from
London – retired elderly compared to young and mobile.
Commissioners work in CCGs (smaller than PCTs) and Specialist Commissioning.
CCGs – 212 in England.
Diagnostics
General surgery and out-patients
AHP and supportive
Palliative and End of Life Care
Specialist Commissioning.
Rare cancers
Complex surgery
Other specialised work
Question – if there was an improvement, what caused it?
Early diagnosis? Better treatment?
* Understanding the incidence of cancer.
Example of Bournemouth and Poole – lung cancer.
*Routes to diagnosis:
- screening
- routine GP referral
- 2-week wait
- emergency admission (25%) – poor diagnosis!
*Impact of performance – lower proportion via emergency for lung.
*GP and MDT-based service profiles
GP practice service profile for cancer. London/university differs from Torquay/Bournemouth.
Question – what makes a good service? The right information at the right time for the patients’
needs.
Bill Allum OG surgeon, Royal Marsden, Chair, Upper GI Clinical Reference Group, NCIN.
National Cancer Peer Review.
First national standards introduced in 2001.
‘Measures’ in 2004, revised in 2008.
Standards were set – improvement in MDT functioning. Still too great a range in peer review scores.
Individual surgeons’ numbers of operations were monitored, and CNS support was improved, but
lack of investment by Trusts not involved in surgery.
Recording was poor, eg proportion of operations with palliative intent.
Insufficient investment by Trusts in data recording.
Clinical lines of enquiry and Clinical indicators are produced.
The National Cancer Oesophageal-Gastric ( OG) Audit showed data on all patients, with information
on treatment planning, morbidity, mortality, survival.
Conclusion: information informs and strengthens Peer Review
Clare Wilkinson, North Wales Centre for Primary Care Research
Primary care cancer intelligence for cancer survivors.
Survivorship study in North Wales.
We need to listen to the patient!
Personalised care for prostate cancers.
Case Study 1 – multiple morbidity. 240 records of ca prostate.
Case Study 2 – George Williams, 92, moving towards palliative care.
Duplication of effort between primary and secondary care
Follow-up failure. Primary aspect of pathway of care. PSA surveillance is skilled, but the rest is in
primary care.
How can the position be improved?
Wales population of 800,000, 602 case per year. 4,000 living with and beyond ca prostate.
Risk stratification – high, medium and low.
Best place of care needs to be considered.
Specialist Commissioning contracts should include follow-up aspects.
DAY 2
‘DOES WHAT WE KNOW CHANGE WHAT WE DO?
Henrik Moller, Professor of Cancer Epidemiology, King’s College, London.
Surgical volumes and cancer survival.
A real opportunity for long-term survival is in surgery.
A study on lung cancer resection published in the European Cancer Journal found a large
geographical variation in resection rate, due to surgery limitations.
A new study of 134,000 ca lung patients showed that 13,000 were resected, ie 9.6%.
Variations in hospital volumes were seen, and an Upper GI (Oesophageal-Gastric) study showed a
20% gain in respectability. 62,800 patients, 13189 resected, ie 21%.
There was a 20% reduction in 1 year mortality.
Benefits of surgical resection in a high-volume hospital were seen.
Professor Peter Sasieni, Wolfson Institute of Preventive Medicine.
Cervical screening and HPV (Human Papilloma Virus) testing.
Over the years cervical screening grew to 2.5M smears annually, and cancer incidence fell by 50% to
12 per 100,000.
Studies have been carried out to assess the age for first screening – now recommended at age 25,
and also the benefits of HPV vaccination, since HPV can lead to cancer.
Randomised studies have been done on primary screening with HPV testing.
(See ‘How much could primary HPV testing reduce cervical cancer and morbidity in England?’
R.Landy, A. Castanon and P.Sasieni - Poster 93 of this conference.)
Incidence in England 2010 was 1800, ie 13 per 100,000.
If HPV testing were introduced, 123 could be prevented, and 1100 deaths would be prevented in 9
years. Conversely, 1100 would die if there were 9 years delay in introducing testing.
Conclusion – there needs to be a definite plan to move from Pilot to Roll-out.
UNDERSTANDING PATIENT EXPERIENCE
Introduced by Dr. Mick Peake, Clinical Lead, NCIN
‘Your Cancer, Your Choice – where to go for treatment?
Factors affecting survival.
Stage at diagnosis – ie how far the cancer has progressed.
Co-morbidities – ie what else is wrong with my body?
Quality of the service – how can I assess this? (www.mycancertreatment.nhs.uk)
Chest X-ray referral rate for lung
Risk adjustment
Misinterpreting data
Limited case load
Note: Patient letters should include a tear-off section on patient experience, to be completed and
returned.
Gary Abel, Cambridge Centre for Health Services Research (CCHSR)
Identifying priorities for improvement, from the results of the National Patient Experience Survey
Need to consider the problem of limited resources
Use a 3D metric;
Improvement is possible – large variation in results
Measurement is meaningful
Performance is truly poor
ICC - Intra-class Correlative Coefficient
Z-score – no of standard deviations from the mean.
See www.cchsr.iph.cam.ac.uk for more details.
Georgios Lyratzopoulos CCHSR
Influence of case-mix on hospital scores of patient experience.
See Conference Posters 81 (Hospital League tables for cancer patient experience – can we tell
anything at all about the performance of smaller hospitals? Conclusion. Differences in the number
of responses causes substantial changes to league table rankings. Possible solution – oversampling
of patients from small hospitals, or designing or choosing more reliable questions. )
and 82 (Association between patient experience and clinical outcomes at the hospital level in
England? Example from clinical audit and patient experience for bowel cancer. Conclusion. Any
correlation appearing from information available is likely to be unreliable, and future conduct of
patient surveys should take this into account in the design of the questions to patients. )
Statistical effect of smaller hospitals.
Impact of those with negative experience;
Younger
Ethnic
Women
Differences between 13 major cancer types
Variations between MDTs, eg Thyroid v. Head and Neck
Heather Kinnear, Queen’s University, Belfast
Living with and beyond prostate cancer.
Prostate is the most common male cancer, and incidence has increased following PSI screening.
Annually 41,000 in UK, 1,000 in Northern Ireland, 2,800 in Republic of Ireland. (34% higher).
Poster 58 gives details of a survey of PCa survivors in Ireland and N.Ireland, using a postal
questionnaire, with a freephone number. The response rate was 58% - many wanted to talk about
their experience. The volume of calls was unexpected, and there is scope for looking at the costeffectiveness of this approach.
Rema Lyer, Gynae Research Centre, UCL.
Patient reported complications following gynae oncology surgery.
Letters were sent to 2152 women, some with free-text reply, and some with questionnaire format.
A questionnaire format provides higher sensitivity. The Clavien and Dindo severity grading system
was used, and additional information not reported by hospitals was obtained.
SCREENING, PREVENTION AND EARLY DIAGNOSIS
Carolyn Gildea, Public Health England (East Midlands)
Impact of the ‘Be Clear on Cancer’ campaign on urgent GP referrals.
On bowel and lug there were regional pilots in 2011, with wider campaign in 2012.
The number of 2 week wait referrals was assessed.
For Bowel, the rate for Feb to April increased from 716/day to 1,000/day, and there was a
corresponding increase in endoscopy rate. It’s too early to assess the impact on the number and
stage of diagnoses.
David Greenberg, NCRS, Eastern.
How much is variation in stage at diagnosis related to the deprivation gap in cancer survival?
Breast cancer was used as an example, and the question was asked how many deaths could be saved
if variation in stage at diagnosis could be avoided. Variation in stage at diagnosis is associated with
inequalities caused by age, socioeconomic level, deprivation. 9 age groups and 5 deprivation
groups were considered, and it was concluded that 450 deaths over 5 years could be saved if
variation in stage at diagnosis could be avoided.
Greg Rubin, Wolfson Research Institute
Should GPs investigate or refer for lower risk symptoms, and does it matter?
Should we improve access to diagnostic tests.
Data from National Audit of Cancer Diagnosis in Primary Care 2009-2010 on 2566 colorectal and
2014 lung patients was analysed. Higher risk symptoms, for which NICE Guidance (2005) mandates
urgent referral were considered, and also lower risk symptoms. About two-thirds of bowel and lung
cancers presented with lower risk symptoms. Investigations with 3+ consultations gave a mean
increase in the primary care interval of 3 to 4 weeks. A first step in determining the most effective
diagnostic strategy for managing lower risk symptoms, and for informing the debate on appropriate
use of investigation strategies.
Paul Aylin, Imperial College London.
Analysis of patients diagnosed by emergency admission.
74,763 patients registered at 457 practices between 1999 and 2008 were checked. Diagnosis by
emergency admission was recorded in 13.9% of patients with a first-ever diagnosis (817 out of
5870). Patients aged >85 years or living in most deprived areas were most at risk of diagnosis by
emergency admission. This highlights potential benefits of targeted interventions, additional
screening and use of staging data.
DOES WHAT WE KNOW CHANGE WHAT WE DO? PART 2
Alan White, Centre for Mens’ Health, Leeds.
Healthtalkonline penile cancer – young men diagnosed with cancer.
48,000 men and 31,000 women per year die from cancer.
For all cancers, there is a higher rate of premature death in men ,ie 210/100,000 for men, and
146/100,000 for women. This variation is unexplained.
Di Riley, Associate Director, Clinical Outcomes, NCIN.
Does information change practice?
Where should we look for change? Seeing GP earlier? Better treatment?
From GP Practice Profiles for Cancer (8500 practices).
6-fold increase in 2 week-wait referrals and a 3-fold increase in diagnosis up to 2009.
Example from Arden Cancer Network, South Warwicks CCG.
Differences in conversion rates – ie proportion of referrals who actually had cancer.
23% first accessed service by emergency route.
Budgets – cancer is 10% of NHS budget, and chemotherapy is 20% of cancer.
SACT dataset provides information on prescription practice.
See www.chemodataset.nhs.uk /demo
Ciaran Devanne, Chief Executive, Macmillan
How Evidence Influences Policy.
The number of people living with cancer is set to double by 2030.
But more people are surviving – see the Report issued by the National Cancer Survivorship Initiative
(NCSI) issued this year. ‘Living with and Beyond Cancer – Taking Action to Improve Outcomes.’
March 2013.
Qi Gong – walking meditation - is recommended. Cost-benefit of improving survival is considered,
with interventions identified.
Multiple myeloma is an example where survival has been improved – Karen Sinclair is a patient, who
was a Welsh cabinet minister.
LESS COMMON CANCERS
Chair: Simon Davies, Chair of Cancer 52
The ‘less common cancers’ account for 53.5% of cancer deaths, but attract only 40% of research
funding (pancreas has only 1%!)
Nicola Dennis, Public Health, West Midlands.
Gynae sarcomas are very rare – accounting for only 1 to 2% of all gynae cancers, and are mainly in
the uterus. It is essential to know the incidence, as treatment is different to carcinomas. Analysis
was done on 5950 gynae cancers between 1985 and 2009, and gynae sarcomas were extracted using
ICD-10 site codes C51 to C58. Incidence is 9.5 per million, with 86% in uterus, in peak age group 55
to 59. 5 year survival is 46%. The next piece of work will cover treatment pathways.
Marta Emmet, Public Health, East Midlands.
Study on different types of cervical cancer, from NCIN and NHS data. Total incidence 2500 per year,
66% squamous cell carcinoma (SCC) and 20% adenocarcinoma, remainder unclassified types. 60%
occur in women aged 25 to 49. Treatment: hysterectomy, chemotherapy, radiotherapy in various
combinations. Survival 80% plus to 1 year, over 70% to 5 year. Neuroendocrine tumours (NET) are
very rare – only 30 per year, survival is poor. Could be dealt with along with other NET tumours, and
screening could help.
Katrina Brown, Cancer Research UK
Presenting brain tumour statistics to the public – unravelling complexity.
Brain tumour statistics are confusing, and need to be clarified for presentation to the public. There
were 9150 Brain and Central Nervous System (CNS) tumours in the UK in 2010, 5425 were brain and
2162 meninges. 54% were malignant, 35% benign and 11% uncertain. Benign tumours can still be
fatal, and are very common in children and Teenagers and Young Adults. But if we include
secondary tumours from melanoma, lung, bowel etc. the total may be 18,000 to 50,000. CRUK will
do a special feature on brain tumours later this month. (I looked on the CRUK website 13.07.13 but
couldn’t find this.)
Matthew Francis, Public Health West Midlands
Endoprosthetic Replacements: 30day readmissions and subsequent amputations, 2000 to 2010.
Patients with bone sarcoma are offered Endoprosthetic Replacements (EPR)(Implants) as an
alternative to amputation. 460 are diagnosed annually, 33% in under 30. From 2000 to 2009 there
were 881 patients with an EPR. Services are commissioned nationally in 5 specialist centres. There
could be infection after treatment, but only 7.8% were recorded as having a subsequent amputation.
WHAT CAN WE LEARN FROM OTHERS? WHAT CAN OTHERS LEARN FROM US?
David Forman, International Agency for Research on Cancer
Cancer benchmarking is done in 6 countries, but there is large variation, eg on inclusion of Stage and
on treatment. International Cancer Benchmarking Partnership (ICBP) collaboration by UK, Canada,
Australia, Denmark, Norway and Sweden on breast, lung, colorectal and ovarian cancers.
See http://www.cancerresearchuk.org/cancer-info/spotcancerearly/ICBP/
SEER datasets (Surveillance, Epidemiology and End Results) used by the US and 6 Nordic countries.
UK has a highly skilled cancer registration workforce in UKACR . All 8 cancer registries now
combined in the NCDR (National Cancer Data Repository)
Worldwide burden of cancer – 21.4 million incidence by 2030 – 30% increase, with 13.2 million
deaths.
Global Initiative for Cancer Registration GICR. 10% of African countries are covered, compared to
100% in Europe and North America. Cancer is now a global WHO indicator.
Regional Hub in Mumbai TATA Memorial Hospital.Also collaboration Wales – Sierra Leone.
There will be a World Cancer Leaders Summit in Cape Town, 18 – 19 November 2013.
Brian Ferguson, Public Health, Northern and Yorkshire.
Wider disease Intelligence Networks.
Future networks based on NCIN:
Child/Maternal
Cardiovascular
End of Life Care
Mental Health
Other networks now ChiMat (Child and Maternal )see www.chimat.org.uk.
Public Health Outcomes Framework sets out desired outcomes and how they will be achieved:
•increased healthy life expectancy
•reduced differences in life expectancy and healthy life expectancy between communities
See https://www.gov.uk/government/news/public-health-outcomes-framework-sets-out-desiredoutcomes
Diabetic Eye Screening Research Advisory Committee (3 patient Reps.)
Thomas Green, TYA Patient, Teenage Cancer Trust.
Putting the Patient at the Heart of what we do.
With Chris Carrigan, gave a moving account of his cancer journey.
John Lancaster.
13 July 2013.