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Cancer: Information Sources for Primary Care
2
Overview
Page Initiative Detail Link
4 GP Practice Profiles
Outcome and process information related
to cancer for every practice
• NCIN Cancer Toolkit
(Note: you need to register to
access the NHS Version)
5 Primary Care Audit Tool Tool to support collection of cancer
diagnosis data in primary care
• Cancer Diagnosis Audit Tool
6 Significant Event Audit Tool to support learning around significant
events related to cancer
• RCGP Improving Diagnosis of
Cancer
7 Referral Decision Support Tools Risk assessment tools to support cancer
diagnosis and referral in primary care
• Macmillan Rapid Referral
Toolkit
• QCancer Risk Calculator
• Risk Assessment Tool
8 Safety Netting Recommendations for managing patients
with potential cancer symptoms
• Safety Netting Consensus
Guidelines
9 Increasing screening uptake Populations least likely to attend screening • Letter template
10 Educational Tools Resources for staff and patients about
cancer
• Mount Vernon Cancer
Network GP Education &
Resource Kits
• Cancer Awareness Toolkit
11 Other Sources of Information Resources relating to other aspects of
cancer prevention and screening
• Making Every Contact Count
• RCGP Matters of Life and
Death
12 Patient Information Tools Links to sources of information for patients
For more information contact James Perry ([email protected])
3
General Practice Profiles
What is it?
A national set of cancer metrics and metadata for every General Practice by Clinical
Commissioning Group (CCG). A local GCG cancer profile trend analysis pack that
accompanies this pulls key metrics from the national dataset and shows how your
practice compares in relation to screening, 2WW and emergency diagnosis.
Why should I use it?
Reviewing the pack and the GP profiles can help your practice better understand its
cancer demography and identify where your practice differs from the national and CCG
average.
Where can I find it?
There are two versions of the national cancer
profiles: Public and NHS, you can access both
from this website:
NCIN Cancer Toolkit
Note: you have to register for the NHS website
The local GP cancer profile trend analysis
should have been sent with this pack, but if not
please request it from [email protected]
4
Primary Care Audit Tool
What is it?
It is a standardised audit template for cancer to assist primary care in understanding
delays in the diagnosis developed by the RCGP and NCAT . The up-to-date audit tools
developed using the latest research and are available free for use by practices.
Why should I use it?
This is a useful tool to identify and act on delays in diagnosis and further develop
understanding of cancer care. Once completed, the results can be shared with your
CCG GP cancer lead so that common issues can be identified, shared with secondary
care and acted upon. (See Appendix One: Audit Process)
Where can I find it?
For the audit template and report click here:
• Cancer Diagnosis Audit Tool
A national report summarising the main findings of the 2010 audit
round is published here:
• RCGP National Audit of Cancer Diagnosis in Primary Care
5
Significant Event Audit
What is it?
Practices are encouraged to use a cancer diagnosis (particularly late diagnosis) as a
trigger for a Significant Event Audit (SEA). It uses a proforma specifically designed for
this purpose by the RCGP and the National Patient Safety Agency.
Why should I use it?
The tool has been designed using information from general practice to provide a method
of understanding significant events related to cancer (e.g. delayed referral, misdiagnosis
etc) and provide a way of exploring the reasons behind these events. Practices may
wish to share key findings with CCGs and GP Cancer Leads.
Where can I find it?
The report and proforma is available here:
RCGP Improving Diagnosis of Cancer
See: Appendix Two: Significant Event Audit
6
Referral Decision Support Tools
What are they?
It is recognised that diagnosis and referral for suspected cancer are rarely
straightforward. A set of tools have been developed to support general practice decisions
around cancer diagnosis and referral.
Why should I use them?
Three tools are identified below. They act as aids to support decision making around
diagnosis and referral. They do not replace clinical judgement but act to aid decision
making.
Where can I find them?
Referral Guidance can be found here:
Macmillan Rapid Referral Toolkit (summary of NICE 2WW and DH direct access
guidelines )
Risk Assessment Tools can be found here:
QCancer Risk Calculator
Risk Assessment Tool
See Appendix Three for more information on the Risk Assessment Tool (RAT)
7
Safety Netting
What is it?
Some cancers have obvious ‘red flag symptoms’ such as a breast lump, but the majority
present with vague symptoms, making early diagnosis difficult. This increases the
complexity of decision making in primary care as the presenting symptoms and signs
may not initially be strong enough to drive referral. Safety netting can be an important
process to ensure that patients keep watch of their symptoms and know when to present
back to primary care.
Why should I use it?
Clinicians seem to agree that the main elements of safety netting are:
1) Communicating the existence of uncertainty,
2) Outlining exactly what the patient needs to look out for,
3) How to seek further help, and
4) What to expect about time course.
Currently, there is no formal consensus for how to use safety netting for cancer in
primary care. Understanding the elements of safety netting is directly relevant to optimal
referral and diagnostic processes, as well as patient empowerment.
Where can I find more information?
A national report is available here: Safety Netting Consensus Guidelines
See Appendix Four for an overview of guidelines on Safety Netting
8
Increasing uptake of screening
What is it?
It is well recognised that there are differences in uptake of screening between different
groups in our communities. There are a variety of ways to encourage uptake of
screening.
Why should I use them?
General Practice has a responsibility to ensure that all relevant patients are encouraged
to attend screening. Understanding the relative effectiveness of different ways to
increase uptake of screening is important, as is knowledge of the patient groups least
likely to attend, so that messages can be tailored to the audience.
Where can I find more information?
Practices may want to consider writing to all patients that do not attend screening
clinics/send screening kits back using a sample letter template - this has been shown to
increase uptake by 10%.
http://pro.mountvernoncancernetwork.nhs.uk/assets/Uploads/links-and-
docs/MVCNCRkitscreening-letterfinal2-4-1.doc
9
Educational Tools
What are they?
These are tools designed to educate primary care staff about prevention, identification
and treatment of cancer.
Why should I use them?
Primary care staff need to be aware of the different types of cancer, prevention
strategies, how to diagnose them and their treatment so that they can support patients in
the best possible way. These tools provide evidenced-based information for primary care
staff about cancer.
Where can I find more information?
There are lots of resources to educate and train primary care staff about cancer.
Examples include:
E-training videos and toolkits: Mount Vernon Cancer Network GP Education & Resource
Kits
Frontline staff training kit: Cancer Awareness Toolkit
Cancer in Primary Care Toolkit and Palliative Care Module: Macmillan learnzone
10
Other sources of information
• Prevention in Primary Care
– Making Every Contact Count
• Every member of staff should know about effective lifestyle interventions that address risk
factors for cancer
• The following is a useful resource: Making Every Contact Count
• National Be Clear on Cancer awareness campaigns
– Practices can order leaflets and posters to display during campaigns
http://www.cancerresearchuk.org/cancer-info/spotcancerearly/naedi/beclearoncancer/materials/
Or by calling DH orderline Tel: 0300 123 1002
https://www.orderline.dh.gov.uk/ecom_dh/public/home.jsf
– Briefing sheets are developed for each campaign tailored to the practice staff, nurses and GPs
http://www.cancerresearchuk.org/cancer-info/spotcancerearly/naedi/beclearoncancer/beclearoncancer
• End of life Care
– Guidance from the RCGP on end of life care: RCGP Matters of Life and Death
• Ovarian Cancer
– Specific GP educational tools Target Ovarian
11
Patient Information Tools
What are they?
A range of resources are available to improve patient knowledge and action
on cancer. These often focus on specific groups (i.e. young people, people
who are learning disabled) and provide information in a way that is
appropriate for that group.
Why should I use them?
These tools are useful as part of your practice’s communication strategy
around cancer. They also inform staff about the best way to communicate
with specific groups and remind them of important information.
Where can I find more information?
Some patient information tools are detailed in Appendix 5
12
For more information:
Please contact:
James Perry
Quality Improvement Lead
East of England Strategic Clinical Network
Robert Lindfield
Consultant in Healthcare Public Health
Anglia & Essex Centre, Public Health England
cunliffeanalytics
Appendices
14
Appendix One: Primary Care Audit Process
The audit process is simple and set out in the step by step guide
below. Step 1: agree who will be responsible for completing the audit. (clinician and lead member
of the administrative staff at minimum)
Step 2: decide on the period of time to be used when identifying cases (usually 12 months,
but can be less) Note: on average eight new cancers will be diagnosed per full time GP per
annum.
Step 3: decide on the data to be collected and identify the sources that will be used for this.
This will primarily involve reviewing the patient’s record, but may include some discussion
with colleagues ~ for example when considering factors related to management of the case,
or possible delays in the patient’s journey.
Step 4: identify all relevant patients. Assuming that all cancer diagnoses have been correctly
coded, and the data entered for QOF purposes, the QOF cancer register is a useful starting
point in identifying relevant cases for audit. However, it will not include patients who have
recently died or left the practice, and it may be necessary to run a separate search using
Read codes (codes for malignant neoplasms have a B root: B0.., B1.., B2.., etc.).
Step 5: include only confirmed malignancies. Ensure that cases of carcinoma in situ and
non-malignant melanoma are excluded from the audit.
Step by step guide sourced from “Improving diagnosis of Cancer: a toolkit for general practice”, E Mitchell, G Rubin & U Macleod,
January 2012
15
Appendix Two: Significant Event Audit
Step 1: decide on the cancer sites and number of cases to be reviewed. For maximum points, QOF expects a minimum of three
SEAs in a 12 month period. You should agree whether it would be most useful to consider a range of cancers, or to review the
most recent diagnoses for a single site.
Step 2: agree who will be responsible for carrying out the SEA(s). Although completion of the report may involve discussion with
colleagues, a co-ordinator should be identified who has responsibility for undertaking the SEA. This might be the clinician who
was most involved with the patient prior to the diagnosis being made.
Step 3: collect as much relevant information as possible before completing the SEA report. This is likely to involve reviewing the
patient’s record, and discussing the event with colleagues who may have been involved with the patient before diagnosis. Where
possible this should include information on the initial presentation (including date, presenting symptom(s), duration of symptoms),
GP response to initial and any ongoing symptoms, use of examination and diagnostic services, the key consultation at which the
diagnosis was made, the patient’s recent presenting history, and the referral (date, type and speciality).
Step 4: organise a team meeting to discuss the case(s). This should be a facilitated meeting for the purposes of shared reflection
and learning. It should be structured, with basic ground rules to ensure that all opinions are valid, and that no ‘blame’ is directed at
any individual(s) during the discussion. Minutes of the meeting should be taken including the key issues identified along with any
related action points. These can then be circulated to all team members, including those who were not present at the meeting.
Step 5: discuss the case using the four questions in the SEA report ~ “What happened?”, “Why did it happen?”, “What has been
learned?”, “What has been changed”? The discussion should involve careful reflection of why events occurred as they did, as well
as identification of any good aspects of care, learning needs, or changes required.
Step 6: agree and implement any changes to be made. This should include identifying and agreeing on someone to oversee the
changes, and to monitor these over a specified time period. This will help ensure that any alterations to practice systems and
procedures are sustained beyond the short term.
Step 7: complete the SEA report documentation. The report template can now be completed using the factual information
collected about the case, the discussion and minutes from the team meeting, and knowledge of the implemented changes. This
can then be used for QOF and/or personal appraisal. In addition, SEA reports could be shared locally.
Step by step guide sourced from “Improving diagnosis of Cancer: a toolkit for general practice”, E Mitchell, G Rubin & U Macleod, January 2012
16
Appendix Three: Risk Assessment Tool (RAT)
A Risk Assessment Tool (RAT) based on research by Professor Willie Hamilton in the CAPER studies (Cancer Prediction in
Exeter), a series of case-control studies which identified symptoms of common cancers that presented to primary care and
quantified the risk of cancer associated with them - currently lung and colorectal only.
The RAT (pdf versions available on request to [email protected])
• The tool helps GPs to decide which patients below the risk level implied by NICE guidelines may benefit from urgent
investigation. The risk values in the tables are the proportion of those people with the listed symptom(s) who have that
cancer type.
– To be used to supplement NICE guidelines
– For patients aged 40 and over
– To calculate the risk value:
• For a single symptom, read the value from the top row
• For a single symptom presented more than once, read the value from the cell on the left hand diagonal
• For multiple symptoms, read the value from the cell combining the worst two symptoms
– Amber and red risk values suggest 2WW referral; yellow and white may well be best managed by review within
primary care, but use your clinical judgement
• MacMillan are also working on a project to integrate the tool into GP systems and tables for other common cancers are
currently being developed by Professor Willie Hamilton.
A training video in its use is available http://www.angcn.nhs.uk/primary-care/awareness-and-early-diagnosis-primary-care-
pack/risk-assessment-tool.aspx
See ‘Example One: Risk Assessment Tool (RAT) for Colorectal Cancer’ & ‘ Example Two: Risk Assessment Tool (RAT) for Lung
Cancer’
17
Example One: Risk Assessment Tool (RAT) for Colorectal Cancer
Colorectal
Con
stip
atio
n
Dia
rrho
ea
Rec
tal b
leed
ing
Loss
of W
eigh
t
Abd
omin
al p
ain
Abd
omin
al te
nder
ness
Abn
orm
al r
ecta
l exa
m
Hae
mog
lobi
n 10
-13g
/dl
Hae
mog
lobi
n
< 1
0 g/
dl
0.4 0.9 2.4 1.2 1.1 1.1 1.5 0.97 2.3 Risk as a single symptom
0.8 1.1 2.4 3.0 1.5 1.7 2.6 1.2 2.6 Constipation
1.5 3.4 3.1 1.9 2.4 11 2.2 2.9 Diarrhoea
6.8 4.7 3.1 4.5 8.5 3.6 3.2 Rectal bleeding
1.4 3.4 6.4 7.4 1.3 4.7 Loss of Weight
3.0 1.4 3.3 2.2 6.9 Abdominal pain
1.7 5.8 2.7 >10 Abdominal tenderness
Appendix Three (continued)
18
Example Two: Risk Assessment Tool (RAT) for Lung Cancer
Lung Cancer Assessment Tool for Non –Smokers
Cou
gh
Fat
igue
Dys
pnoe
a
Che
st p
ain
Loss
of w
eigh
t
Loss
of a
ppet
ite
Thr
ombo
cyto
sis
Abn
orm
al s
piro
met
ry
Hae
mop
tysi
s
0.4 0.4 0.7 0.8 1.1 0.9 1.6 1.6 2.4 Risk as a single symptom
0.6 0.6 0.8 0.8 1.8 1.6 2.0 1.2 2.0 Cough
0.56 0.9 0.8 1.0 1.2 1.8 4.0 3.3 Fatigue
0.9 1.2 2.0 2. 0 2.0 2.3 4.9 Dyspnoea
0.9 1.8 1.8 2.0 1.4 5.0 Chest pain
1.2 2.3 6.1 1.5 9.2 Loss of weight
1.7 0.9 2.7 >10 Loss of appetite
3.6 >10 Thrombocytosis
>10 Abn. spirometry
17 Haemoptysis
Lung Cancer Assessment Tool for Smokers
Cou
gh
Fat
igue
Dys
pnoe
a
Che
st p
ain
Loss
of w
eigh
t
Loss
of a
ppet
ite
Thr
ombo
cyto
sis
Abn
orm
al s
piro
met
ry
Hae
mop
tysi
s
0.9 0.8 1.2 1.3 2.1 1.8 4.2 4.0 4.5 Risk as a single symptom
1.3 1.0 1.4 0.9 2.3 2.8 6.5 3.6 3.9 Cough
1.2 1.4 1.3 2.0 2.3 2.4 >10 6.1 Fatigue
1.5 2.2 3.1 5.5 2.4 >10 6.9 Dyspnoea
1.4 4.4 7.6 >10 >10 4.1 Chest pain
1.7 5.0 >10 >10 * Loss of weight
2.7 * * * Loss of appetite
* 12 Haemoptysis
* The original study was not able to
calculate figures for these boxes, but
they are almost certainly red.
Appendix Three (continued)
19
Appendix Four: Safety netting advice recommendations
Recommended safety netting
information to communicate to
the patient High Priority Cancer Safety Netting
Advice (Include in patient
communication)
The likely time course (time to
resolution of self-limiting condition) of
current symptoms (e.g. cough, bowel
symptoms, pain)
Specific information about when and
how to re-consult if symptoms do not
resolve in the expected time course
Specific warning symptoms and signs
of serious disease (e.g. cancer)
Who should make a follow up
appointment with the GP, if needed
(usually requesting the patient make
the appointment, sometimes the
doctor)
Intermediate Priority (Consider
including in patient communication
)
If a diagnosis is uncertain, give a clear
explanation for the reasons for tests or
investigations (e.g. to exclude the
possibility of serious disease or
cancer)
If a diagnosis is uncertain, that
uncertainty should be communicated
to the patient
Recommended safety netting
actions that GPs should take
during or shortly after the
consultation
High Priority Cancer Safety Netting
Advice (Include in consultations)
Safety net advice should be
documented in the medical notes
GPs should consider referral after
repeated consultations for the same
symptom where the diagnosis is
uncertain (e.g. three strikes and you
are in).
The GP should ensure that the patient
understands the safety netting advice
GPs should take additional measures
to ensure that safety netting advice is
understood in patients with language
and literacy barriers
GPs should keep up to date on
current guidelines for urgent referral
for suspected cancer
Intermediate Priority (Consider
including in consultations)
If symptoms do not resolve, further
investigations should be conducted
even if previous tests are negative
Safety netting advice should be given
verbally
Recommended safety netting actions for Practices.
High Priority Cancer Safety Netting Advice – (Ensure patient
communication procedures are in place)
The practice should have procedures in place to ensure that patients
are aware of how to obtain results of investigations
Practices should ensure that current contact details are available for
patients undergoing tests/investigations or referrals
The practice should have a system for communicating abnormal test
results to patients
Practices should have a system for contacting patients with
abnormal test results who fail to attend for follow up
High Priority (Ensure reliable practice systems are in place)
Practice systems should be in place to document that all results
have been viewed, and acted upon appropriately
Practices should have policies in place to ensure that
tests/investigations ordered by locums are followed up
Practices should conduct significant event analysis for delayed
diagnoses of cancer (focusing on symptoms, signs, diagnostic
procedures, continuity of care and reasons for delay)
Intermediate Priority (Consider using reliable practice systems)
Practice systems should be able to highlight repeat consultations for
unexplained recurrent symptoms/signs
Practices should conduct an annual audit of new cancer diagnoses
Practices should participate in cancer awareness campaigns
Practice staff involved in processing /logging of results should be
aware of reasons for urgent referral under the 2 week wait
20
Appendix Five: Patient Information
• The following pages give a list of websites that provide information about
cancer for patients.
• The list is not exhaustive. We welcome feedback about these and other
websites you find useful.
• We suggest that you are aware of the information contained on the
websites before recommending them to patients.
• We have only listed websites from recognised organisations (Cancer
Research UK, NHS Choices, Macmillan) that focus on evidence-based
interventions.
• We have not reviewed each and every resource so cannot vouch for their
quality.
21
Prevention and Early Detection
Website with information about cancer
prevention
http://www.nhs.uk/LiveWell/preventing-cancer/Pages/Preventing-cancer-
home.aspx
Interactive tool to support health living choices
related to cancer prevention http://www.cancerresearchuk.org/cancer-info/healthyliving/
Interactive tool to aid risk assessment of early
cancer
http://www.cancerresearchuk.org/cancer-info/spotcancerearly/
Interactive tool to aid risk assessment of
cancerous moles
http://www.nhs.uk/Tools/Pages/moleassessment.aspx
Interactive tool to aid risk assessment of ovarian
cancer
http://www.nhs.uk/Tools/Pages/ovarian-cancer-
symptoms.aspx?Tag=Female+health
Interactive tool to aid risk assessment of bowel
cancer
http://www.nhs.uk/Tools/Pages/Bowel-cancer-self-
assessment.aspx?Tag=Screening+and+tests
Appendix Five (continued)
22
Information for Young People with Cancer
Website for young people (19-24) who have
been diagnosed with cancer.
http://www.nhs.uk/young-cancer-care/pages/index.aspx
General Information about Cancer
Webpage with information about the results
of tests for cancer (including staging)
http://www.nhs.uk/Livewell/cancer/Pages/Understandingyourresults
.aspx
Website with extensive list of cancers with
links to information on each cancer
http://www.cancerresearchuk.org/cancer-help/type/
Appendix Five (continued)
Information about cancer for people who are learning disabled
A video guide to breast screening for anyone
with a learning disability
http://www.nhs.uk/Tools/Pages/Your-guide-to-breast-screening-
video-wall.aspx?Tag=Female+health
A list of resources about cancer and end-of-
life for people who are learning disabled
(Note: some of these have to be ordered and
are not free)
http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-
questions/books-on-cancer-for-people-with-learning-disabilities
Information on cancer for people who do not speak English
Cancer information leaflets in ten different
languages
http://www.macmillan.org.uk/Cancerinformation/Otherformats/Forei
gn.aspx
