Bowel Screening RESOURCE FOR PROVIDERS WORKING WITHIN THE

BowelScreening
RESOURCE FOR PROVIDERS
WORKING WITHIN THE
BOWELSCREENING PILOT
BowelScreening: Resource for providers
working within the BowelScreening Pilot
Published in March 2012 by
Waitemata District Health Board
Private Bag 93503, Takapuna,
North Shore City 0740
ISBN 978-0-473-20766-3 (print/paperback)
ISBN 978-0-473-20767-0 (online/PDF)
This document is available electronically on the
BowelScreening Waitemata website:
www.bowelscreeningwaitemata.co.nz
Hard copies are available from the Information
Centre on 0800 924 432 or by emailing
[email protected]
The information in this resource may be
changed from time to time. The updated
version will be available on the BowelScreening
website www.bowelscreeningwaitemata.co.nz
BowelScreening
RESOURCE FOR PROVIDERS
WORKING WITHIN THE
BOWELSCREENING PILOT
2
» CONTENTS
LIST OF TABLES................................................................................................................4
LIST OF DIAGRAMS...........................................................................................................4
PART ONE: BACKGROUND INFORMATION................................................................... 5
Introduction....................................................................................................................................................... 6
Key BSP messages...........................................................................................................................................7
Important BSP contacts..............................................................................................................................10
BSP resources and documents.................................................................................................................10
Abbreviations and acronyms...................................................................................................................... 11
PART TWO: THE BOWEL SCREENING PATHWAY.......................................................12
Background to the BowelScreening pilot............................................................................................. 13
The screening pathway................................................................................................................................14
The role of Primary Health Organisations and General Practice Teams................................... 18
The role of the Coordination Centre......................................................................................................20
The BSP Register............................................................................................................................................ 21
Exclusion criteria........................................................................................................................................... 22
Increased risk.................................................................................................................................................. 22
Identification, pre-invitation, invitation and participation............................................................. 23
Identification....................................................................................................................................................... 24
Pre-invitation...................................................................................................................................................... 24
Invitation and participation......................................................................................................................... 24
Follow-up......................................................................................................................................................... 25
iFOBT test results..........................................................................................................................................26
Positive results................................................................................................................................................... 27
Negative results................................................................................................................................................30
Unclear results...................................................................................................................................................30
Diagnostic testing.......................................................................................................................................... 31
Pre-assessment.................................................................................................................................................. 31
Colonoscopy.......................................................................................................................................................33
Alternative investigations.............................................................................................................................36
Surveillance.........................................................................................................................................................38
Treatment.........................................................................................................................................................39
PART THREE: SUPPORT SERVICES FOR THE BOWELSCREENING PILOT............ 40
Aims of the BowelScreening pilot...........................................................................................................41
Objectives of the BowelScreening pilot................................................................................................41
Community engagement...........................................................................................................................42
The immunochemical faecal occult blood test (iFOBT)................................................................43
Faecal occult blood tests.............................................................................................................................43
Immunochemical faecal occult blood test description..................................................................44
The test kit.......................................................................................................................................................45
Monitoring, evaluation, and audit...........................................................................................................46
3
PART FOUR: IWI/MĀORI AND PACIFIC PROVIDERS.................................................47
Iwi/Māori providers......................................................................................................................................48
Pacific providers............................................................................................................................................48
PART FIVE: MINISTRY OF HEALTH INFORMATION....................................................49
Informed consent..........................................................................................................................................50
Code of Health and Disability Services Consumers’ Rights.......................................................... 51
Health Information Privacy Code............................................................................................................. 51
Whānau Ora.....................................................................................................................................................41
PART SIX: BACKGROUND INFORMATION ABOUT BOWEL
CANCER AND BOWEL CANCER SCREENING.............................................................52
Bowel cancer in New Zealand.................................................................................................................. 53
About bowel cancer..................................................................................................................................... 53
About bowel cancer screening................................................................................................................ 53
Organised screening for bowel cancer................................................................................................. 55
Bowel screening and Māori.......................................................................................................................56
He Korowai Oranga (Māori Health Strategy)......................................................................................56
Te Pae Māhutonga........................................................................................................................................... 57
Treatment outcomes for Māori..................................................................................................................59
PART SEVEN: REFERENCES AND FURTHER INFORMATION................................... 61
Further reading..............................................................................................................................................62
Glossary............................................................................................................................................................63
Bibliography....................................................................................................................................................66
APPENDICES....................................................................................................................68
Appendix 1: Pre-invitation letter..............................................................................................................69
Appendix 2: Invitation letter.....................................................................................................................70
Appendix 3: Consent form......................................................................................................................... 71
Appendix 4: BowelScreening Test Kit Instructions.......................................................................... 72
Appendix 5: Negative result letter......................................................................................................... 73
Appendix 6: Postive result letter............................................................................................................. 74
Appendix 7: Participant information booklet ‘All About BowelScreening’......................................... 75
Appendix 8: Participant information leaflet ‘BowelScreening – Your Quick Reference Guide’.76
Appendix 9: Participant information leaflet ‘BowelScreening – All Clear’............................................ 77
Appendix 10: Participant information leaflet ‘BowelScreening – Further Investigation’...............78
Appendix 11: People at increased risk of bowel cancer.................................................................. 79
People identified as at increased risk through screening............................................................ 80
Symptoms suggestive of bowel cancer................................................................................................. 81
Appendix 12: NZ Familial Gastrointestinal Cancer Registry......................................................... 83
Who to refer to the NZFGCR?...................................................................................................................83
What does the NZFGCR do?......................................................................................................................83
NZFGCR contact information....................................................................................................................84
4
» LIST OF TABLES
TABLE 1
Key messages
TABLE 2
Key contacts within the BSP
10
TABLE 3
Resources and documents within the BSP
10
TABLE 4
Screening pathway responsibilities and requirements
15
TABLE 5
Key input from PHOs and GPTs
18
TABLE 6
Contact details for Coordination Centre
20
TABLE 7
Follow-up triggers and actions
25
TABLE 8
Notifying results to participants
26
TABLE 9
Roles and responsibilities for conducting pre-assessment
32
TABLE 10
Roles and responsibilities for colonoscopy procedures
35
TABLE 11
Roles and responsibilities for alternative investigations
36
TABLE 12
Roles and responsibilities for surveillance
38
TABLE 13
Roles and responsibilities for referral for treatment
39
TABLE 14
Objectives of the BSP
41
TABLE 15
Guidance on effective bowel screening for Māori
58
7
» LIST OF DIAGRAMS
DIAGRAM 1
Stakeholder relationship diagram
DIAGRAM 2
Screening pathway
14
DIAGRAM 3
Identification, pre-invitation, invitation and participation
23
DIAGRAM 4
Management of kit by lab
27
DIAGRAM 5
Management of positive result
29
DIAGRAM 6
Colonoscopy investigation
34
DIAGRAM 7
Alternative investigation
37
6
» COLOUR KEY
Ministry of Health
GPTs, GPs, and PHOs
Endoscopy unit
General public
Participants
WDHB
LabPLUS
Coordination Centre
ADHB
PART ONE: BACKGROUND
INFORMATION
6
» INTRODUCTION
This document provides health practitioners with information about
the Waitemata District Health Board (WDHB) BowelScreening pilot
(BSP).
The BSP model of screening has been designed to closely integrate
with primary care. Primary Health Organisations (PHOs) and General
Practice Teams (GPTs) have been involved in the scoping and planning
of the BSP and have key roles in the pilot. This document outlines
those roles.
» STAKEHOLDER RELATIONSHIPS
GPTs and
PHOS
LabPLUS
Participants/
Coordination
Centre
Endocscopy
unit
patients
Community/
general public
7
» KEY BSP MESSAGES
TABLE 1: KEY MESSAGES
TOPIC
KEY MESSAGE
REFERENCE
PHO AND GPT
ENDORSEMENT
PHOs and GPTs have been involved in the
development of the BSP and endorsed the screening
model, which is closely integrated with primary care
Page 18
SERVICES
The BSP is a four-year population-based screening
programme which offers screening to the eligible
population (137,000 people, projected to rise by 3
percent every year) every two years
Page 13
CATCHMENT
Participants in the BSP must reside in the WDHB area
(Rodney, Albany, North Shore, Waitakere, and parts of
the Whau ward). However, they may attend any GP
practice in any area
Page 13
PAYMENT
Participation in the BSP is free. GPs are remunerated
for contacting their patients to advise of a positive
iFOBT result, discussing the implications of the
positive result, and referral to colonoscopy. This
consultation may be undertaken in person or by
telephone, as appropriate
Page 18
COORDINATION
CENTRE
The BSP Coordination Centre has overall
responsibility for the programme
Page 20
BSP REGISTER
A population register has been created for the BSP
(the BSP Register). The details on the register are
taken from the NHI and PHO enrolment databases,
and individuals who self-register
Page 21
AGE RANGE
• The age range for the BSP is 50–74 years
Page 13
• Most people in the eligible population will be
invited to participate in two screening rounds
within the four-year period
• A
ll eligible people who turn 74 in 2012 will be
invited for screening in 2012
• P
eople who will turn 75 during 2012 will not
receive an invitation and will need to contact the
BowelScreening programme on 0800 924 432
if they wish to complete a bowel screening test
before their 75th birthday. People are no longer
eligible to take part in the programme once they
turn 75
8
TOPIC
KEY MESSAGE
REFERENCE
PARTICIPATION
•
articipation in the BSP is by invitation only. The
P
Coordination Centre invites eligible people to
participate in the BSP according to their birth date
Pages 20, 25
•
eople who accept the invitation to participate in
P
the BSP will be recalled for screening in two years
if they are still eligible
•
Ps do not need to invite their patients to
G
participate in the BSP. Invitations are sent by the
Coordination Centre
•
ligible people are sent a pre-invitation letter
E
advising them about the BSP
PRE-INVITATION
•
INVITATION
Page 24
Appendix 1
he pre-invitation letter includes information
T
about screening and a booklet to assist people to
make an informed decision about participating in
screening
Four weeks after the pre-invitation letter, an invitation
letter is sent to eligible people. The invitation letter
includes:
Page 24
Appendix 2
Appendix 3
-a leaflet to assist people to make an informed
decision about participating in screening
-an immunochemical faecal occult blood test
(iFOBT) kit
-a consent form
-a Freepost envelope to send their sample to
LabPLUS
SAMPLES
TESTING
•
articipants in the BSP take a single sample at
P
home, using the iFOBT kit that is posted out to
them by the Coordination Centre
•
articipants post the sample to the laboratory for
P
testing, using the Freepost envelope provided
The testing laboratory for the BSP is LabPLUS at
Auckland DHB
Pages 45, 46
Appendix 4
Page 26
9
TOPIC
KEY MESSAGE
REFERENCE
RESULTS
•
Page 26
The laboratory sends results to:
– BSP Register (at the Coordination Centre)
– participants’ GPs
PEOPLE WHO
SHOULD NOT
PARTICIPATE IN
THE BSP
•
GPs are responsible for notifying participants of
positive results
•
GPs
must advise participants of positive results
and refer participants for colonoscopy within 10
working days
•
articipants are advised of negative results by
P
letter from the Coordination Centre
•
People with symptoms of bowel cancer should
not participate in the BSP, but should see their
GP as soon as possible. Common signs and
symptoms of bowel cancer may include:
– a
change in a person’s normal pattern of going
to the toilet that continues for several weeks,
such as diarrhea, constipation or feeling that the
bowel doesn’t empty completely
– blood in the bowel
•
People should not participate in the BSP
if they:
– have
had a colonoscopy within the last five
years
– are
on a bowel polyp or bowel cancer
surveillance programme
– have
had or are currently being treated for
bowel cancer
– have had their large bowel removed
– are
currently being treated for ulcerative colitis
or Crohn’s Disease
– are
currently awaiting bowel investigations by
their doctor
Appendix 11
10
» IMPORTANT BSP CONTACTS
TABLE 2: KEY CONTACTS WITHIN THE BSP
CONTACT
DETAILS
Information line
0800 924 432
Website
www.bowelscreeningwaitemata.co.nz
Email address
[email protected]
Coordination Centre
PO Box 33190
Takapuna
Auckland 0740
BSP Endoscopy Unit at Waitakere Hospital
09 837 8892 x 6892
» BSP RESOURCES AND DOCUMENTS
TABLE 3: RESOURCES AND DOCUMENTS WITHIN THE BSP
RESOURCE
FOR
AVAILABLE FROM
Posters
General public
Coordination Centre
Website
Health professionals
www.bowelscreeningwaitemata.co.nz
General public
Participant information
booklet ‘All About
BowelScreening’
Participants
Participant information
leaflet ‘BowelScreening –
Your Quick Reference Guide’
Participants
Participant information
leaflet ‘BowelScreening –
All Clear’
Participants
Participant information
leaflet ‘BowelScreening –
Further Investigation’
Participants
Participant information
‘BowelScreening Test Kit
Instructions’
Participants
Website
GPTs
www.bowelscreeningwaitemata.co.nz
Provider resource
GPTs and specialists
Coordination Centre
Education sessions
GPTs
Coordination Centre
Quality and Procedures
Manual
BowelScreening pilot
providers
Under development
Coordination Centre
Wickliffe
(email: [email protected])
Coordination Centre
Wickliffe
(email: [email protected])
Coordination Centre
Wickliffe
(email: [email protected])
Coordination Centre
Wickliffe
(email: [email protected])
Coordination Centre
Wickliffe
(email: [email protected])
11
» ABBREVIATIONS AND ACRONYMS
BSP
BowelScreening Pilot
CRC
Colorectal Cancer
CRCSAG
Colorectal Cancer Screening Advisory Group
CTC
Computerised Tomographic Colonography
DCBE
Double Contrast Barium Enema
DHB
District Health Board
FOBT
Faecal Occult Blood Test
iFOBT
Immunochemical Faecal Occult Blood Test
gFOBT
Guaiac Faecal Occult Blood Test
FS
Flexible Sigmoidoscopy
GP
General Practitioner
GPT
General Practice Team
IBD
Inflammatory Bowel Disease
MDM
Multi-Disciplinary Meeting
NHI
National Health Index
NHS
National Health System
NMDS
National Minimum Dataset
NSU National Screening Unit
NPV
Negative Predictive Value
NZCR
New Zealand Cancer Registry
NZFGCR
New Zealand Familial Gastrointestinal Cancer Registry
NZHTA
New Zealand Health Technology Assessment
OECD
Organisation for Economic Cooperation and Development
PHO
Primary Health Organisation
PN
Practice Nurse
PPV Positive Predictive Value
RCT
Randomised Controlled Trial
PART TWO: THE BOWEL
SCREENING PATHWAY
13
» BACKGROUND TO THE BOWELSCREENING
PILOT
Waitemata District Health Board (WDHB) has been funded by the Ministry
of Health (the Ministry) to plan and implement a four-year bowel screening
pilot. The BowelScreening pilot (BSP) is a population-based screening
programme that offers screening for bowel cancer to all eligible people
between 50-74 years of age who reside in the WDHB area and are eligible
for publicly funded healthcare.
The overarching goal of the BSP is to determine whether an organised
bowel screening programme can be introduced in New Zealand in a
way that is effective, safe, acceptable to the participants, equitable and
economically efficient.
This is the first time that a population register has been used to invite
people to participate in a cancer screening programme in New Zealand.
The BSP will run from 2011 to 2015, with services commencing in October
2011.
The BSP project will ensure that:
•
screening is offered to all eligible people domiciled in the Waitemata
DHB area who are aged between 50-74 years
•
all eligible people have access to written information to assist them to
make an informed decision about participating in screening, before they
consent to screening
•
the results from screening are made available to all people screened in a
timely manner
•
every person with a positive screening test result is given appropriate
information and referred to colonoscopy pre-assessment and diagnostic
services
•
diagnostic services are accessible and of high quality
•
robust data collection and quality monitoring systems are developed
•
health professionals involved in screening and diagnostic services have
attained the required professional qualifications
•
all providers of screening services have access to written information
and education opportunities about screening.
Fundamental to the success of the BSP is the design of systems and
processes that work for all of the eligible population, including traditionally
under-screened populations.
14
» THE SCREENING PATHWAY
NHI database
extract
PHO enrolment
database
BSP Register
(of eligible population)
Pre-invitation letter and
information booklet sent to
eligible person
Opt off
4 WEEKS
Invitation letter, test kit, and consent
form sent to eligible person
Opt off
Sample posted to laboratory
POSITIVE
10 DAYS
Result to
BSP Register
and patient’s GP
NEGATIVE
Coordination Centre sends letter
and information to participant
GPT/ Senior Endoscopy
Nurse referral to colonoscopy
Recall for screening
in two years
50 DAYS
Surveillance
Colonoscopy
Treatment
Recall for screening
in five years
15
TABLE 4: SCREENING PATHWAY RESPONSIBILITIES AND
REQUIREMENTS
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Identification
PHOs in the WDHB
district
Provision of data extract to the
BSP Register in the Coordination
Centre
The Ministry
Pre-invitation letter
Coordination Centre,
with GP endorsement
Sending of pre-invitation letters
and booklets about screening to
eligible people
Invitation to participate
in screening
Coordination Centre
Sending of invitation letters to
eligible people with:
–– a leaflet to assist people to
make an informed decision
about participating in screening
–– an immunochemical faecal
occult blood test (iFOBT) kit
–– a consent form
–– a Freepost envelope to send
their sample to LabPLUS
Testing samples
LabPLUS
Receipt and testing of samples
Notification of results
to GPs and the
Coordination Centre
LabPLUS
Electronic messaging of results
to the Coordination Centre, and
to GPs (except where participant
does not consent to this on the
BSP consent form)
Notification of positive
results to participants
GPs
Contact with patient and referral
to colonoscopy within 10 working
days
Endoscopy Unit
(Senior Endoscopy
Nurse)
Personal contact with participant
who does not have a GP or who
for any other reason has not
been contactable by GP for preassessment for colonoscopy
Coordination Centre
Notifying participants of negative
results by letter
Notification of negative
results to participants
16
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Endoscopy services
Endoscopy Unit
•
Provision of colonoscopy preassessment and colonoscopy
•
Assessment of family history
with referral to New Zealand
Familial Gastrointestinal
Cancer Registry (NZFGCR)
where appropriate
(Appendix 12)
•
Entering colonoscopy preassessment and appointment
details into the BSP
information system
•
Standardised reporting for
colonoscopy outcomes and
collection of colonoscopy
performance data
•
Provision of histopathology for
samples taken at colonoscopy
•
Standardised reporting of
histopathology results into
WDHB systems
•
Entering colonoscopy
outcomes into BSP
information system
•
Advising histology results and
recommended actions to GP
and patient
Colonoscopy
histopathology
LabPLUS
Endoscopy Unit
CT colonography
Endoscopy Unit
• Referral for CTC for
participants deemed unfit for
colonoscopy or from failed
colonoscopy
• Entering outcomes into BSP
information system
• Advising CTC results and
recommended actions to GP
and patient
Treatment
Waitakere or North
Shore Hospital
Provision of CTC
WDHB
Provision of surgery
ADHB
Radiation/chemotherapy oncology
through standard practice
Endoscopy Unit
Manual collection and entry into
BSP information system of data
from treatment, by the Senior
Endoscopy Nurse
17
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Surgery histopathology
WDHB laboratory
Provision of histopathology for
patients undergoing surgical
resection
Endoscopy Unit
•
Collecting outcomes and
entering into the BSP
information system
•
Advising histology results and
recommended actions/actions
taken to GP and patient
Colonoscopy
surveillance within 12
months
Colonoscopy
surveillance from 12
months onwards
Endoscopy Unit
Letter to GP and patient advising
that patient is on surveillance
colonoscopy waiting list
WDHB Endoscopy
Service
Scheduling surveillance
colonoscopy with one year
Endoscopy Unit
Letter to GP and patient advising
referral of patient for colonoscopy
at appropriate time
GP
Refer to WDHB Endoscopy
Service at appropriate time (note:
this is the symptomatic service,
not the BSP endoscopy unit)
The screening pathway ends when a participant is returned to routine
screening, or referred for surveillance, surgery or oncology treatment.
However, treatment data is collected for BSP monitoring and evaluation
purposes.
18
» THE ROLE OF PRIMARY HEALTH ORGANISATIONS AND GENERAL PRACTICE TEAMS
Waitemata District Health Board PHOs and GPTs have a fundamental role
in the BSP. PHOs and GPTs have been involved in planning for the BSP
since the scoping phase, and have endorsed the current screening model,
which closely integrates primary care.
TABLE 5: KEY INPUT FROM PHOS AND GPTS
KEY INPUT FROM PHOs AND GPTs FOR THE BSP
PHOs
• Provide eligible participant registers to the Coordination Centre,
through a quarterly data extract from PHO registers, to:
–– enhance the BSP Register
–– enable GPs to be informed of their patients’ screening results
• Support activities to inform and educate GPTs on bowel cancer,
increased risk groups (see Appendix 11) and the BSP
• Coordinate processes for invoicing and payment of GPs for
positive results management
GPTs
• Provide information and advice about bowel cancer symptoms
to patients
• Endorse the BSP to eligible people
• Advise eligible people that the programme has been endorsed
by their practice
• Encourage their patients to contact the Coordination Centre to
check that their details are recorded correctly on the BSP Register
• Support communications and community engagement activities
(for example, by having posters and leaflets in GP surgeries)
• Assist the Coordination Centre to identify people who do not
meet the eligibility criteria for the BSP
• Provide advice about the BSP to their patients who have not sent
in a sample
• Inform their patients of positive results:
–– Appropriate care of patients and established best practice
for continuity of care involves GPs advising their patients
of positive screening test results. This may also enhance
the likelihood of the patient undertaking further diagnostic
investigation and treatment if clinically indicated. GPs should
inform patients of positive results within 10 working days of
receipt of the result
19
KEY INPUT FROM PHOs AND GPTs FOR THE BSP
GPTs
• Refer patients for a screening colonoscopy:
–– For patients with positive results, GPs make a referral to the
Endoscopy Unit for a screening colonoscopy and provide
additional clinical information where relevant. The Endoscopy
Unit contacts the patient to undertake pre-assessment, confirm
an appointment time for colonoscopy and provide bowel
preparation guidance and materials
• Encourage patients with positive results to remain within the
public system:
–– It is preferable that non-symptomatic patients with positive
results are seen in the public sector, to minimise the extent
to which the efficacy of the screening programme may be
compromised. However, even with the encouragement of
GPs and specialists to use the BSP colonoscopy service, some
patients will choose the private sector
• In addition to the above, refer patients to NZFGCR in the case of
an increased risk of developing bowel cancer for familial reasons
20
» THE ROLE OF THE COORDINATION CENTRE
Overall management and coordination of the BSP is undertaken by the
Coordination Centre.
TABLE 6: CONTACT DETAILS FOR COORDINATION CENTRE
ROLE
Programme manager
Information line (for the public and GPs)
CONTACT
(09) 484 0205
0800 924 432
The overarching role of the Coordination Centre is to ensure that
participants proceed safely along the screening pathway in a timely
manner. To achieve this, the Coordination Centre is responsible for
ensuring that the eligible population is:
•
informed about the existence of the pilot and the risks and benefits
of participating
•
included on the BSP Register, and has their status changed to
‘ineligible’ if they become ineligible and ‘withdrawn’ if they opt off
•
provided with information about how to opt off
•
sent iFOBT kits and consent forms
•
followed up with a reminder letter if they do not respond to the
invitation to participate in the BSP
•
provided with active follow-up if they are in priority segments of the
population
•
informed promptly and sensitively of the results of their iFOBT (for
positive results, this function will usually be provided by GPs, but
the Coordination Centre has ultimate responsibility for ensuring it
happens)
•
provided with timely diagnostic investigation, treatment or
surveillance as necessary.
21
The Coordination Centre:
•
is responsible for updating participant details on the BSP Register and
managing queries from the public
•
liaises with PHOs, GPTs, communications and community engagement
partners, Māori/Iwi providers, Pacific providers, LabPLUS, the BSP
Endoscopy Unit, the provider arm of the DHB and the NZFGCR
•
interfaces with the Ministry and the evaluation team appointed by the
Ministry, and monitors the performance of BSP service providers.
» THE BSP REGISTER
A population register has been created for the BSP to allow the
Coordination Centre to contact the eligible population and invite them to
participate in screening.
The BSP Register is populated from three different sources:
•
the National Health Index (NHI) database
•
PHO enrolment registers
•
those who self-register (if they have not been identified through the NHI
or PHO registers).
The BSP Register is intended to contain demographic details of the
complete eligible population (people aged 50 to 74 years of age) in the
pilot region. Primary identification is via the NHI, with supplementary
information obtained from PHO registers. Individuals who fit the eligibility
criteria, but have not been identified in the BSP Register, may self-register
by contacting the Coordination Centre.
Information from the Cancer Registry is used to try to ensure people with
a registered bowel cancer are not invited to participate.
22
» EXCLUSION CRITERIA
Inclusion and exclusion criteria have been developed for participation
in the BSP and are set out in the paper “Bowel Cancer Programme:
Inclusion/Exclusion Criteria”.1 The paper sets out the policy and rationale
for inclusion and exclusion, and options and possible pathways for those
who are excluded.
People who turn 75 during the life of the pilot will no longer be eligible
and, if they are not in a current screening episode, will be exited from the
pilot whether or not they have completed two rounds.
People with symptoms or signs suggestive of bowel cancer should consult
their GP, whether or not they are eligible to participate in the BSP.
» INCREASED RISK
The BSP eligible screening population is people at “average” risk of bowel
cancer. People who otherwise meet the criteria for inclusion in the BSP,
but are at increased risk are excluded from the BSP (Appendix 11).
They require access to specialist services for assessment, diagnostic
testing and ongoing surveillance, including referral to the NZFGCR in the
case of an increased risk of developing bowel cancer for familial reasons
(Appendix 12).
1
Ministry of Health. 2009. Bowel Cancer Programme: Inclusion/Exclusion Criteria
23
»
IDENTIFICATION, PRE-INVITATION,
INVITATION AND PARTICIPATION
BSP Register
(of eligible
population)
Pre-invitation letter and information
booklet sent to eligible person
Opt off
4 WEEKS
Invitation letter, test kit, and consent
form sent to eligible person
Priority population:
NO
Sample sent to
laboratory
within 2 weeks?
Opt off
General population:
Sample sent to laboratory
within 4 weeks?
NO
Reminder letter
sent
YES
Active
follow-up
Sample sent
to laboratory?
YES
YES
Sample tested at
laboratory and result
provided to
Coordination Centre
and GPT
NO
YES
Sample sent to
laboratory
within 4 weeks
of reminder?
NO
Recall for screening
in two years
24
IDENTIFICATION
Identification of the eligible population is undertaken using the BSP
Register.
PRE-INVITATION
Initial contact with the eligible population is through a pre-invitation letter
sent by the Coordination Centre. An example of the pre-invitation letter is
included as Appendix 1.
The letter has a generic endorsement by prospective participants’ GPs and
has BSP branding and the WDHB logo. For people not registered with a
GP, the letter is endorsed by the Coordination Centre.
The letter:
•
advises people about the BSP, and that they are eligible to
participate
•
includes primary care endorsement of the pilot
•
dvises people that they will receive an invitation and an iFOBT kit
a
from the BSP unless they notify the Coordination Centre that they do
not wish to participate
•
includes a comprehensive booklet (‘All About BowelScreening’) to
assist people to make an informed decision about participating in
the BSP
•
ncourages people to discuss bowel screening with their GPT
e
(for example, if they have concerns or questions).
Pre-invitation letters are being used in the BSP because they have been
shown to increase participation in bowel screening internationally.
INVITATION AND PARTICIPATION
Four weeks after the pre-invitation letter, an invitation to participate in
the BSP is sent to the eligible population by the Coordination Centre.
An example of the invitation letter is included as Appendix 2.
People may opt off at this stage by advising the Coordination Centre or
their GP.
25
The invitation letter includes:
•
a leaflet (‘BowelScreening – Your Quick Reference Guide’) to assist
people to make an informed decision about participating in screening
•
an iFOBT kit
•
a consent form
•
a Freepost envelope to send their sample to LabPLUS.
People who take a sample and send it to LabPLUS are choosing to
participate in the BSP.
People take their own sample at home and post it in the Freepost envelope
supplied, via New Zealand Post to LabPLUS. They must include their
consent form. An example of the consent form is included as Appendix 3.
LabPLUS sends the results electronically to the BSP Register and
electronically to the participant’s GP via HL7 messaging on Healthlink.
If a sample is not received by LabPLUS within four weeks and the
person has not opted off, the Coordination Centre sends the prospective
participant a reminder letter advising that a replacement kit may be
requested (if they have, for example, spoiled or mislaid their kit).
Priority populations (Māori, Pacific and Asian people) who have not
returned their test kit within two weeks are followed up via telephone and
community outreach services.
» FOLLOW-UP
Active follow-up is a process designed to ensure fair access to the BSP for
all eligible people in the pilot region.
Follow-up is triggered when eligible people do not return a sample within
two or four weeks of being sent an invitation letter.
TABLE 7: FOLLOW-UP TRIGGERS AND ACTIONS
FOLLOW-UP TRIGGER
FOLLOW-UP
An eligible person in a priority
population has not sent in a sample or
opted off two weeks after an invitation
was sent
Māori, Pacific and Asian community
and support workers contact people via
phone calls and/or home visits
An eligible person has not sent in a
sample or opted off four weeks after an
invitation was sent A reminder letter from the Coordination
Centre
26
» IFOBT TEST RESULTS
LabPLUS tests iFOBT samples within three working days of receipt and
sends all results electronically to the BSP Register and participants’ GPs.
TABLE 8: NOTIFYING RESULTS TO PARTICIPANTS
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Notification of all
results to BSP Register
and GPs
LabPLUS
Electronic notification of all results
to GPs and BSP Register within
three days of receipt (includes
positive, negative and spoilt kit
results)
Notification of positive
results to participants
with an identified GP
GPs or Practice
Nurses
• Notification of positive results
to participants as soon as
possible, and always within 10
working days of receiving the
result from LabPLUS
• Advising participants that
they will be contacted by
the Endoscopy Unit for a
colonoscopy pre-assessment
Notification of positive
results to participants
with no identified GP
Endoscopy Unit
• Follow up of participants
who have not been able to
be contacted by their GP or
Practice Nurse
• Notification of positive results
to participants without a
named GP
Notification of negative
results to participants
Coordination Centre
• Notification of negative results
(by letter) to participants. If
the participant has a named GP
the GP will already have been
notified electronically by the
laboratory
• Sending of replacement kits
to participants whose samples
were unable to be tested
27
» MANAGEMENT OF KIT BY LAB
Sample tested by
laboratory
Positive
Negative
Spoilt or technical fail
Result to BSP Register and
patient’s GP
Result to BSP Register and
patient’s GP
Letter and
replacement kit sent
GPT/Senior Endoscopy
Nurse referral to colonoscopy
Letter sent to participant
GPT notified
Recall for screening
in two years
Opt off or
participate
Colonoscopy
pre-assessment
POSITIVE RESULTS
GPs must contact their patient within 10 working days of receiving a
positive result from LabPLUS, to:
•
inform their patient of the result
•
discuss the implications of the result
•
provide counselling and advice
•
refer their patient to the Endoscopy Unit for a screening colonoscopy.
PATIENTS SHOULD BE REFERRED TO ‘BOWEL
SCREENING WAITEMATA’ AND THE REFERRAL FAXED
TO THE NORTH SHORE HOSPITAL REFERRAL CENTRE
ON 09 486 8348.
28
Recognising the key role of GPs in providing ongoing health care for their enrolled
population, GP involvement at this stage in the screening pathway is expected
to lead to better colonoscopy attendance and lower anxiety for participants with
positive results.
Participants with a positive result and no GP named on their consent form are
contacted by the Senior Endoscopy Nurse within 15 working days of a positive
result.
All participants who are referred to the Endoscopy Unit are contacted for a
colonoscopy pre-assessment by the Senior Endoscopy Nurse within 15 working
days of a positive result.
After the pre-assessment, participants are sent:
•
confirmation of the positive result
•
confirmation of the colonoscopy date
•
a pamphlet which explains positive test results
•
information on the colonoscopy procedure
•
information on bowel preparation
•
bowel preparation tablets and sachets.
If a GPT is unable to contact a participant with a positive iFOBT within 10 days,
responsibility for active follow up transfers to the Senior Endoscopy Nurse, who
attempts to contact the participant by phone and, if appropriate, makes a referral
to Community Support Workers, who may make a home visit.
If all attempts at contact are unsuccessful, the Senior Endoscopy Nurse sends
the participant a letter outlining the positive result and encouraging him/her to
contact their GP or the Coordination Centre. If no contact is made, the participant
is placed on the iFOBT recall system, and remains on the BSP Register. The recall
date for an iFOBT will be two years from the date of invitation if the participant
does not proceed with colonoscopy or other diagnostic procedure.
The participant will be referred for a colonoscopy if they contact their GP or the
Coordination Centre at any time during the BSP.
Where a participant with a positive result declines a diagnostic procedure, the
Senior Endoscopy Nurse advises the participant’s GP. The participant may contact
the Coordination Centre within six months if they change their mind. If the
participant chooses to return for a colonoscopy after the six month period, it is at
the discretion of the BSP Clinical Director, in consultation with the participant’s GP.
29
» MANAGEMENT OF POSITIVE RESULT
GPT/Senior
Endoscopy Nurse
informs patient of
positive result
Endoscopy
Unit contacts
participant
Unable to contact
Contact successful
Active follow-up
Follow-up unsuccessful
Notify GP
Telephone
pre-assessment
Recall for screening
in two years
NO
Endoscopist
pre-assessment
YES
Appointment information
and bowel screening
prep sent to participant
YES
Fit for
colonoscopy
NO
Colonoscopy
Alternative
investigation
30
NEGATIVE RESULTS
Participants with negative results are notified in writing by the Coordination
Centre within 15 working days of the result being received on the BSP
Register, and advised they will be recalled to screening in two years, if
still eligible. Participants will also receive the ‘BowelScreening – All Clear’
leaflet.
UNCLEAR RESULTS
The Coordination Centre sends new iFOBT kits to people whose samples
are unable to be processed (“spoilt” results). GPs receive the “spoilt” result
from LabPLus.
31
» DIAGNOSTIC TESTING
PRE-ASSESSMENT
All participants with positive results are referred for a colonoscopy preassessment to assess health fitness for the procedure and to provide
them with full information about colonoscopy, including the possible risks
and outcomes. The pre-assessment is conducted by a senior endoscopy
nurse. Pre-assessment will include assessment of a participant’s family
history of bowel cancer, with referral to the NZFGCR where appropriate.
Pre-assessment may be undertaken either by telephone or face-to-face,
depending on the participant’s preference and clinical condition. If the
participant requires a pre-assessment outpatient consultation the nurse will
arrange this with the participant and the Lead Colonoscopist. Nurse-led
colonoscopy pre-assessment ensures support for the participant and liaison
between the colonoscopy service and the Coordination Centre.
Participants deemed fit for colonoscopy are offered an appointment for the
procedure during pre-assessment. Colonoscopy must be completed within
55 working days of the positive result.
Participants deemed not fit for colonoscopy (and those who have a failed
colonoscopy) are referred for an alternative diagnostic investigation,
Computerised Tomographic Colonography (CTC).
Participants assessed as high-risk for colonoscopy require certain
precautions to be taken to minimise risk during the procedure. High-risk
individuals include those:
•
receiving warfarin medication
•
with insulin-dependent diabetes mellitus
•
with prosthetic heart valves
•
undergoing peritoneal dialysis
•
receiving immunosuppressing medication
•
with previous history of endocarditiis.
Participants may also be deemed high risk for colonoscopy due to
significant co-morbid disease. In this situation, the Endoscopy Unit
coordinates a multi-disciplinary discussion and facilitates a decision on
appropriate management, and keeps the person’s GP involved in this
process.
2
NHS Rapid Response Report, available at www.npsa.nhs.uk/rrr
32
Participants assessed as fit and who consent to colonoscopy are given:
•
an appointment
•
bowel preparation instructions
•
culturally acceptable information about the procedure
•
culturally appropriate support to attend, if required
•
information on links to local support services.
There are potential risks associated with bowel preparation. Death and
harm from electrolyte abnormalities, dehydration and serious gastrointestinal problems have been reported following the inappropriate use of
oral bowel cleansing solutions (Picolax®, Citramag® , Fleet Phospho-Soda®,
Klean Prep®, Moviprep®) prior to surgery and/or investigative procedures.
Frail and debilitated elderly patients and those with contraindications
are particularly at risk from these treatments. It is therefore critical that
clinical experts who routinely assess patients for colonoscopy provide a
dedicated pre-assessment service.
TABLE 9: ROLES AND RESPONSIBILITIES FOR CONDUCTING
PRE-ASSESSMENT
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Arrange colonoscopy
pre-assessment
Endoscopy Unit
(Senior Endoscopy
Nurse)
• Carrying out a colonoscopy
pre-assessment
• Scheduling a date for
colonoscopy
• Informing participants about
bowel preparation
Ensure participants
with positive results
have undergone a
colonoscopy preassessment within 15
working days of iFOBT
testing
Coordination Centre
Ensuring all participants with a
positive result have undergone a
colonoscopy pre-assessment and
have a scheduled colonoscopy
appointment in the BSP Register
Ensure exchange
of patient clinical
information for
colonoscopy preassessment
GPs and Practice
Nurses
Developing a process to enable
GPs and Practice Nurses to inform
the Senior Endoscopy Nurse of
their patient’s relevant clinical
information when referring to
colonoscopy
33
COLONOSCOPY
Colonoscopy for the BSP is provided by a dedicated Screening
Colonoscopy Unit at Waitakere Hospital in West Auckland. The unit has the
capacity to deliver 2500 colonoscopies a year.
Participants with ‘normal’ colonoscopies do not need to undergo another
iFOBT screening episode for five years and are referred back to their GP. If
screening is extended beyond the four years of the pilot, these people will
be re-invited to participate when they become eligible again.
Participants diagnosed with bowel cancer or high-risk polyps are referred
for treatment or enter the surveillance programme run by the WDHB.
Participants’ GPs are notified and these participants are considered to have
exited the screening programme.
Participants diagnosed with cancer or other bowel disease requiring
ongoing surveillance have their care handed over to the gastroenterology
service by the Coordination Centre, and are exited from the BSP.
34
» COLONOSCOPY INVESTIGATION
Colonoscopy
appointment
Appointment
NO
attended?
Active follow-up
YES
Colonoscopy
Notify GPT
Result
Recall for screening
in two years
No abnormality
detected
Repeat
colonoscopy
Failed
Colonoscopy
Abnormality
detected
Notify GPT
Increased risk
Cancer
Other
Recall for screening
in five years
Refer as per
NZGG
surveillance
Refer to MDT
Refer, advise,
and treat
YES
Inadequate bowel
preparation?
NO
Alternative
investigation
Notify GP
35
TABLE 10: ROLES AND RESPONSIBILITIES FOR COLONOSCOPY
PROCEDURES
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Preparation for
colonoscopy
Endoscopy Unit
(Senior Endoscopy
Nurse)
• Scheduling of appointment for
colonoscopy at pre-assessment
• Ensuring information and bowel
preparation material is sent to
participant
• Linking participant with
culturally appropriate support
to colonoscopy services as
required
• Assessing a participant’s family
history of bowel cancer with
referral to the NZFGCR, if
appropriate
Endoscopy Unit
(Administrator)
• Reminder letter and/or
telephone call within one week
of procedure
• Follow-up support about
colonoscopy requirements
Colonoscopy
outcomes
Endoscopy Unit
(Senior Endoscopy
Nurse)
• Collection of outcomes from
colonoscopy via a standardised
reporting format which includes
polyp and biopsy information
• Collection of performance
data, using dedicated software,
internally audited and reviewed
at BSP quality monitoring
meetings
• Documentation of colonoscopy
outcomes in the BSP
information system
Colonoscopy
histopathology
Colonoscopy
histopathology results
management
Endoscopy Unit
(Senior Endoscopy
Nurse)
Sending samples to LabPLUS by
courier each working day
LabPLUS
Reporting histopathology results,
using a standardised reporting
template, directly into Concerto
Endoscopy Unit
(Endoscopist)
Conveying results and
recommended next steps to
participant and GP
36
ALTERNATIVE INVESTIGATIONS
Participants assessed as unfit for colonoscopy, or with an incomplete
colonoscopy, are offered a Computerised Tomographic Colonography (CTC)
investigation. The Medical Imaging Department at Waitakere Hospital
retains emergency appointment slots each day, and these may be available
for screening participants. If a slot is not available the participant is either
kept overnight (depending on bed availability) or offered an appointment
at Waitakere Hospital or North Shore Hospital the following day.
TABLE 11: ROLES AND RESPONSIBILITIES FOR ALTERNATIVE
INVESTIGATIONS
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
CTC
Endoscopy Unit
(Administrator)
Securing appointment for CTC as
per standard procedures
Medical Imaging
Department,
Waitakere or North
Shore Hospital
Provision of CTC within
the timeframes and quality
requirements of the BSP Quality
Standards
Endoscopy Unit
(Senior Endoscopy
Nurse)
Entering procedure date and
outcomes into the BSP Register
CTC outcomes
37
» ALTERNATIVE INVESTIGATION
CT Colonography
YES
Attended
radiology
appointment?
NO
Active follow-up
Further
investigation
required?
NO
GPT notified
YES
Recall for screening
in two years
Abnormality
detected
Increased risk
Cancer
Other
Refer as per
NZGG
surveillance
Refer to MDT
Refer, advise,
and treat
Notify GP
38
SURVEILLANCE
Participants requiring ongoing surveillance are exited from the BSP, referred to
a surveillance programme, and not recalled for subsequent screening.
Surveillance is defined by the New Zealand Guidelines Group guidelines
‘Surveillance and Management of Groups at Increased Risk of Colorectal
Cancer’.3 Participants falling within these guidelines are referred to WDHB’s
Gastroenterology Unit. This unit operates according to the guidelines and
has approximately 1250 patients on a regular surveillance programme.
Patients requiring surveillance colonoscopy within one year are placed on the
Endoscopy Unit waiting list. Those requiring surveillance colonoscopy over
longer timeframes are discharged to their GP with a request to re-refer at the
appropriate time.
If a participant is considered to be at potentially high risk of developing
bowel cancer, on the basis of their family history, they should be referred to
the NZFGCR (Appendix 12).
TABLE 12: ROLES AND RESPONSIBILITIES FOR SURVEILLANCE
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Refer for surveillance
Endoscopist
• Advising participants they have
been referred for surveillance
• Notifying participants’ GPs
of surveillance management
requirements
3
Endoscopy Unit
Entering information about
surveillance requirements into the
BSP Register and removing from
screening pathway
Refer for surveillance
colonoscopy
GP
Referring patient for surveillance
colonoscopy within recommended
timeframe
Monitoring of
surveillance
WDHB
Auditing of BSP participants
who have been referred to
surveillance if participants receive
a surveillance colonoscopy within
the guidelines (Surveillance
and Management of Groups at
Increased Risk of Colorectal
Cancer, 2004)
New Zealand Guidelines Group. Surveillance and Management of Groups at Increased Risk of
Colorectal Cancer. Ministry of Health. 2004.
39
» TREATMENT
Participants diagnosed with cancer are referred to a colorectal MultiDisciplinary Meeting (MDM). Referrals are made using a standardised,
regional bowel cancer MDM form. An MDM form is used as both a referral
form and a record of the decisions made at the meeting. It captures
information in a standardised way to:
•
enable efficient presentation of bowel cancer patients in MDM
•
enable rapid referral after MDM by using the MDM form instead
of dictating a referral letter
•
collect data from the MDM forms for real-time performance
measurement.
MDMs are held weekly at North Shore Hospital and include surgeons,
a radiologist, a pathologist, a medical oncologist and a radiation
oncologist. MDMs provide recommendations for culturally appropriate
and coordinated care, advice and support. Outcomes of MDMs are
communicated to the participant and their GP, and are documented in the
medical records.
All patients who require chemotherapy and/or radiation therapy are
managed by the Auckland Regional Cancer and Blood Service at
Auckland District Health Board (ADHB). ADHB is the regional provider
of oncology services for the WDHB population.
Participants diagnosed with cancer are not recalled for screening.
TABLE 13: ROLES AND RESPONSIBILITIES FOR REFERRAL
FOR TREATMENT
BSP PATHWAY
RESPONSIBILITY
REQUIREMENTS
Referral for treatment
Endoscopist
Referral of participants diagnosed
with bowel cancer to MDM and
treatment services
Collection of treatment
data
Senior Endoscopy
Nurse
Entering of outcomes from
treatment into the BSP Register
PART THREE: SUPPORT
SERVICES FOR THE
BOWELSCREENING PILOT
41
» AIMS OF THE BOWELSCREENING PILOT
The BSP’s key aims are to assess whether a national bowel screening
programme in New Zealand:
•
is likely to achieve the mortality reduction from bowel cancer seen in
international randomised controlled trials
•
can be delivered in a manner that:
––
is safe and acceptable
––
eliminates (or does not increase) inequalities between Māori and
non-Māori
––
is cost-effective.
» OBJECTIVES OF THE BOWELSCREENING PILOT
TABLE 14: OBJECTIVES OF THE BSP
OBJECTIVE
DESCRIPTION
Programme design
To pilot:
• the use of a population register (the BSP
Register), in conjunction with primary health
care, to invite a target population for screening
• a Coordination Centre and associated
information system to manage a screening
pathway
Screening effectiveness
To assess the early indicators of the effectiveness
of bowel screening
The iFOBT experience
To assess the performance and acceptability of the
chosen iFOBT in the New Zealand context
Participation and coverage
To determine the level of participation and
coverage for the eligible and invited populations
Quality
To pilot the agreed quality standards and
monitoring requirements along the screening
pathway and assess the implications for a national
programme; and in particular the acceptability and
safety of the standards and screening to providers
and for different population groups
42
OBJECTIVE
DESCRIPTION
Service delivery and
workforce capacity
To monitor effects and implications for a national
bowel screening programme, including resource
implications of screening activities, on:
• primary care
• community health services
• laboratory services
• secondary and tertiary services
Fair access for all New
Zealanders
To determine whether a bowel screening
programme can be delivered in a way that
provides fair access to all New Zealanders,
and in particular, to evaluate the processes
designed to eliminate inequalities in planning and
implementation, including the ability of the pilot
site to identify factors which eliminate or reduce
inequalities
Cost-effectiveness
To determine costs of all services along the
screening pathway to assess the cost-effectiveness
of a bowel screening programme, and to compare
this to other preventative programmes in New
Zealand and bowel screening programmes
internationally
Acceptability to the target
population
To pilot the provision of information and support
to the target population to facilitate informed
participation, and evaluate the knowledge,
attitudes, and satisfaction of groups of participants
(defined by sex, age, ethnicity, socioeconomic
status and rurality) in the screening pilot,
including identifying factors associated with nonparticipation
Acceptability to providers
To evaluate knowledge, attitudes, and acceptability
to health professionals and health care providers
based on community, primary care, and hospital
settings
» COMMUNITY ENGAGEMENT
GP and PHO endorsement of the BSP are complemented by community
engagement to raise awareness of bowel cancer and the benefits of
screening. Community engagement is focused primarily on priority
population groups. Engagement processes include:
43
•
advertising in community newspapers
•
posters in GP surgeries and other locations appropriate to the eligible
age group
•
targeted engagement with community groups and spokespeople,
kaumatua, and Pacific elders
•
availability of a website and information line
•
public relations, including community ‘influencers’.
The Coordination Centre health promotion team includes a Māori support
position, and Pacific and Asian providers are contracted to provide
information and support to their populations.
International bowel screening programmes have found participation for ethnic
minority groups, people from lower socio-economic groups and men is lower
than other screened groups. Māori and Pacific peoples have higher mortality
from bowel cancer due to late diagnosis.
Evidence indicates that community engagement will assist in the success of
the BSP, particularly for population groups that have been under-screened by
other screening programmes.
Māori and Pacific peoples are priority populations that are likely to need extra
support to ensure that all New Zealanders have fair access to the screening
pilot. As monitoring and evaluation of the pilot progresses, the priority
populations may change to reflect any emerging patterns in participation.
» THE IMMUNOCHEMICAL FAECAL OCCULT BLOOD TEST (IFOBT)
FAECAL OCCULT BLOOD TESTS
Faecal occult blood tests are tests for microscopic amounts of blood or
breakdown products of blood in or on the stool, with the presence of blood
being used as an indicator of neoplasia (especially cancer and larger polyps).4
These tests require the collection of faecal material which is then tested for
blood.
4
Young GP, St John DJ, Winawer SJ, Rozen P. 2002. Choice of faecal occult blood tests for colorectal cancer
screening: recommendations based on performance characteristics in population studies: a WHO (World
Health Organisation) and OMED (World Organisation for Digestive Endoscopy) report. Am J Gastroenterol.
97(10):2499-507, Kerr J, Broadstock M, Day P, Hogan S. 2005. Effectiveness and Cost-effectiveness of
Population Screening for Colorectal Cancer. New Zealand Health Technology Report Volume 8, Number 1.
Christchurch: New Zealand Health Technology Assessment, Australian Government Department of Health and
Ageing. 2005. Bowel Cancer Screening Pilot Monitoring and Evaluation Steering Committee. Australia’s Bowel
Cancer Screening Pilot and Beyond. Final Evaluation Report. Canberra: Department of Health and Ageing,
Commonwealth of Australia.
44
There is a normal loss of blood in the stool5 up to 1–2 ml per day.6 Cancers
and larger polyps bleed intermittently with about two-thirds of cancers
bleeding in the course of a week.7
Two main types of faecal occult blood tests are currently in use:
•
guaiac based tests (gFOBT)
•
immunochemical based tests (iFOBT).
An iFOBT has been chosen for use in the BSP due to its improved test
characteristics compared to guaiac testing. Immunochemical tests are
analytically and clinically more sensitive, their measurement can be
automated, and the programme can adjust the positivity threshold to
ensure optimum cancer detection and a sustainable diagnostic service.
IMMUNOCHEMICAL FAECAL OCCULT BLOOD TEST
DESCRIPTION
Immunochemical faecal occult blood tests use antibodies to detect
partial sequences of antigenic sites usually on the globin portion of the
haemoglobin molecule. The antibodies do not react to non-human globins
or with plant peroxidises (as with guaiac based tests) thus eliminating the
need for dietary restrictions.8 Because globin is degraded in the upper
gastrointestinal tract, the test is not sensitive to upper gastrointestinal
bleeding (also an issue with guaiac based tests).9
5
Dybdahl JH, Daae LN, Larsen S, et al. 1984. Occult Faecal blood loss determined by a 51Cr method and
chemical tests in patients referred for colonoscopy. Gastroenterol. 19(2):245-54, Robertson JD, Maughan
RJ, Davidson RJ. 1987. Fecal blood loss in response to exercise. Br Med J (Clin Res Ed) 295(6593):3035, Bird HA, Hill J, Haw WM et al. 1985. A comparison of Fecal blood loss caused by Tenoxicam and
piroxicam in normal healthy male volunteers. Curr Med Res Opin. 9(8):524-8.
6
Crooke M. 2005. Faecal Occult Blood Tests. A presentation to the Colorectal Cancer Screening
Advisory Group, Dybdahl JH, Daae LN, Larsen S, et al. 1984. Occult Faecal blood loss determined
by a 51Cr method and chemical tests in patients referred for colonoscopy. Gastroenterol. 19(2):24554, Young GP, Macrae FA, St John DJB. 1996. Clinical methods for early detection: Basis, use and
evaluation. In: Young GP, Rozen P, Levin B (eds). Prevention and early detection of colorectal cancer.
London: Saunders 241-70.
7
Kerr J, Broadstock M, Day P, Hogan S. 2005. Effectiveness and Cost-effectiveness of Population
Screening for Colorectal Cancer. New Zealand Health Technology Report Volume 8, Number 1.
Christchurch: New Zealand Health Technology Assessment.
8
Ouyang DL, Chen JJ, Getzenberg RH, et al. 2005. Noninvasive testing for colorectal cancer: A review.
Am J Gastroenterology 100:1393-1403.
9
Rockey DC, Auslander A, Greenberg PD. 1999. Detection of upper gastrointestinal blood with
fecal occult blood tests. Am J Gastroenterol 94:344-50, Nakama H, Kamijo N, Fattah AS, Zhang
B. 1998. Immunologic detection of fecal occult blood from upper digestive tract diseases.
Hepatogastroenterology 45(21):752-4, Nakama H, Kamijo N, Fujimori K, et al. 1996. Diagnostic accuracy
of immunochemical faecal occult blood test for gastric cancer. J Med Screen. 3(3):113-4, McDonald
CA, Burford Y, Yuen AC, et al. 1984. Immunochemical detection of fecal occult blood. Aust N Z J Med.
14(2):105-10.
45
Sample collection varies for different types of immunochemical tests.
The OC-Sensor test used for the BSP involves participants collecting a small
sample of bowel motion by scraping the tip of a collection stick across the
bowel motion a few times.
The iFOBT is the simplest primary screening test for bowel cancer.
Because no dietary or therapeutic restrictions are required (unlike gFOBT),
participation rates are higher compared with gFOBT (by 13 percent in one
study).10
There are no direct known safety issues with iFOBT. However, there
are concerns relating to hygiene at the time of sampling and test
transportation.
» THE TEST KIT
A single sample immunochemical faecal occult blood test (iFOBT) made
by Eiken has been selected by the Ministry of Health for use in the BSP.
The test, known as OC-Sensor, is an iFOBT widely used in screening
programmes internationally. It is currently used in bowel screening
programmes in Italy, Spain, Japan, Taiwan, Korea, Australia and the United
States, and extensive work around its use is underway in France and the
Netherlands. A growing number of screening programmes using the older
and less accurate gFOBT are considering moving to this test.
The OC-Sensor test was selected because it best met criteria identified for
use and success in New Zealand. Criteria included:
•
extensive use in international screening trials and programmes
•
an extensive body of evidence supporting the test
•
the ability to automatically analyse the samples, reducing the chance of
error
•
the ability to modify the positivity threshold, to identify more possible
cancers
•
that test samples will be sufficiently stable for the New Zealand climate
•
value for money.
As the test requires collection of only one faecal sample, it was also
considered more likely to be acceptable to the population than tests
requiring multiple samples.
10
Young GP, St John DJ, Winawer SJ, Rozen P. 2002. Choice of faecal occult blood tests for colorectal
cancer screening: recommendations based on performance characteristics in population studies: a WHO
(World Health Organisation) and OMED (World Organisation for Digestive Endoscopy) report. Am J
Gastroenterol. 97(10):2499-507, Cole SR, Young GP. 2001. Participation in faecal occult blood test-based
screening for colorectal cancer is reduced by dietary restriction. Med J Aust 175:195-8
46
To collect a sample, participants scrape the tip of a collection stick across
their bowel motion a few times. They then replace the stick in the sample
tube, seal it in a ziplock bag and post it in the Freepost envelope provided
to LabPLUS for testing.
» MONITORING, EVALUATION, AND AUDIT
Waitemata District Health Board has entered into a contract with the
Ministry to plan and implement the BSP. The Ministry and WDHB have
developed and agreed a service delivery model. The Ministry has written
a comprehensive set of draft quality and operating standards, as well as
draft monitoring indicators. WDHB is required to report against these
indicators and provide screening services to the required standards.
The Ministry has contracted with providers of evaluation services who
will report regularly on the status of the pilot against a wide range of
evaluation areas.
The Coordination Centre is responsible for coordinating and monitoring
all components of the BSP screening pathway, and ensuring that each
participant receives high-quality services in accordance with the required
timeframes. WDHB is responsible for ensuring that resources are available
to meet demand for colonoscopy within the required timeframe, without
adversely affecting the waiting time for symptomatic procedures. WDHB
is also responsible for ensuring that LabPLUS delivers sample analysis,
histology and reporting services to the standards set by the Ministry.
Monitoring and quality oversight is provided by the Ministry and the BSP
Quality Group in the first instance. However, governance, quality and
monitoring arrangements may change as the pilot progresses.
PART FOUR: IWI/MĀORI
AND PACIFIC PROVIDERS
48
» IWI/MĀORI PROVIDERS
Māori and Pacific interests are represented in the governance structures
of the BSP and Māori and Pacific provider groups are represented through
working groups to ensure that delivery of the BSP achieves high coverage
rates in these priority populations.
Four Māori- and Pacific-focused providers serve more than a quarter
of the total Māori and Pacific eligible registered population. Their
involvement in and commitment to the BSP is fundamental to its success.
Their role is the same as that of other general practices. In addition, the
BSP has close linkages with these providers in the active follow-up of
Māori and Pacific non-responding participants, coordinated by a Māori
care coordinator employed by the Coordination Centre and Pacific care
coordinators via contracts with Pacific providers.
WDHB Iwi/Māori partners also play an important role in the community
engagement processes. All community engagement, except for posters
and newspaper articles, targets high-priority population groups, with the
aim of reducing inequalities.
» PACIFIC PROVIDERS
Waitemata District Health Board’s two providers serving a predominantly
Pacific population, West Fono Health Trust and Pasifika Integrated
Family Medical, have over a quarter of the total eligible enrolled Pacific
population in the district. They have a key role in achieving high uptake in
this priority population group.
PART FIVE: MINISTRY OF
HEALTH INFORMATION
50
» INFORMED CONSENT
An important part of informed consent is the aspect of being
‘informed’ or receiving information. The information that participants
in the BSP will need is outlined below.
1.
Entering the screening pathway
––
That they are consenting to participate in the bowel screening
pathway and what that pathway entails
––
Options, risks and benefits of participating
––
Information about bowel cancer, its signs and symptoms and
what to do if these are present
––
Implications for family or whānau members
2.iFOBT
––
Information about iFOBT, including its efficacy and how to
take a sample
––
What happens to their sample after testing
––
Any secondary uses of the sample (e.g. quality control), and
that the sample will only be used for its intended purpose
––
Third party access (if relevant)
3. Other points along the screening pathway
––
That written consent will be obtained for services along the
screening pathway according to each service’s standard
practice (e.g. consent to colonoscopy)
4. Opting off the programme
––
Enough information to enable an informed decision
––
Advice that opting off will prevent them from receiving future
invitations or reminders, but that they can return to the
programme at any time
5. Participating in a pilot study
––
Advice on the purpose of the study
––
The type of information being collected
––
How the information will be used
––
What their management needs are once the pilot has ceased
51
» CODE OF HEALTH AND DISABILITY SERVICES CONSUMERS’ RIGHTS
The Code of Health and Disability Services Consumers’ Rights provides
that New Zealand health care consumers have a legal right to appropriate
information to enable them to give informed consent. Information about
the Code can be obtained from the Health and Disability Commissioner’s
website at www.hdc.org.nz.
» HEALTH INFORMATION PRIVACY CODE
The Health Information Privacy Code 1994 (HIPC) sets specific rules for
agencies in the health sector to better ensure the protection of individual
privacy. It applies to health information collected, used, held and disclosed
by health agencies. For the health sector, the HIPC takes the place of the
information privacy principles in the Privacy Act 1993. The HIPC can be
viewed on the Privacy Commissioner’s website at www.privacy.org.nz.
» WHĀNAU ORA
Whānau Ora is about:
•
facilitating positive and adaptive relationships within whānau
•
recognising the interconnectedness of health, education, housing,
justice, welfare, employment, and lifestyle as elements of whānau
wellbeing
•
ensuring Māori families are supported to achieve their maximum health
and wellbeing.
The Whānau Ora tool is available on the Ministry of Health website at
www.moh.govt.nz.
PART SIX: BACKGROUND
INFORMATION ABOUT
BOWEL CANCER AND
BOWEL CANCER SCREENING
53
» BOWEL CANCER IN NEW ZEALAND
Bowel cancer was the second most common cancer in New Zealand and
the second highest cause of cancer death in 2008. That year, 2801 people
were diagnosed with bowel cancer, and 1280 people died from the disease.
New Zealand’s death rate from bowel cancer is one of the highest in the
developed world, with the third highest mortality rate in the OECD for
women and the sixth highest for men.
By 2016, the number of new cases of bowel cancer diagnosed each year is
projected to increase by 15 percent for men and 19 percent for women to
3302 (for all ages).
» ABOUT BOWEL CANCER
Bowel cancer usually develops within a pre-existing adenomatous polyp,
typically over many years. The extent of spread of a cancer is known as
its stage. There are various staging systems.11 Most are modifications of
the Dukes’ Staging System: stage A is cancer confined to the bowel wall;
in stage B it penetrates through the bowel wall; and in stage C cancer has
invaded the regional lymph nodes. Stage D has been added to identify
patients with cancer that has spread to other organs.
The primary aim of screening for bowel cancer is to detect the cancer
before symptoms develop. Screening also provides an opportunity to
identify colorectal polyps that are likely to progress to cancer (thereby
preventing development of the disease).
» ABOUT BOWEL CANCER SCREENING
Although bowel cancer may occur at any age, 90 percent of cases are in
individuals over 50 years of age. Overseas screening programmes usually
screen men and women between the age of 50 and 74 years.
International evidence shows that a bowel screening programme may
significantly reduce mortality from bowel cancer, and there is some
evidence that suggests it could reduce the incidence of bowel cancer
through the detection of pre-cancerous lesions.
In recent years, population-based bowel screening programmes have been
introduced in many countries and others have begun large scale pilots
to determine the feasibility of such a programme in their country. Bowel
11
Fielding LP, Arsenault PA, Chapuis PH, et al. 1991. Clinicopathological staging for colorectal cancer:
an International Documentation System (IDS) and an International Comprehensive Anatomical
Terminology (ICAT). J Gastroenterol Hepatol 6(4):325–44.
54
screening programmes are either running or being piloted in Australia, the
United Kingdom, Korea, Japan, Israel and most countries in the European
Union.
There is a strong association between the stage (extent) of bowel cancer
at diagnosis and eventual survival. Those with localised disease have
a 90 percent chance of a five-year survival. Those with distant spread
(metastases) have only a 10 percent five-year survival rate. There is
evidence to suggest that a higher percentage of detected cancers are
found at a more advanced stage (greater spread of cancer) in New
Zealand than in several countries where there are national or regional
screening programmes, including Australia and the United Kingdom.
Modelling in Ireland has concluded that a screening programme based on
a biennial immunochemical faecal occult blood test (iFOBT) for people
aged 55-74 could provide a lifetime reduction in the incidence of (15
percent) and mortality from (36 percent) bowel cancer.12
In New Zealand, a Ministerial Taskforce provided expert advice and
recommendations to the Minister of Health and the Ministry on a
programme to improve bowel cancer outcomes for all New Zealanders.
The Taskforce provided strategic guidance on the direction and approach
for establishing each component of the programme including:
•
development and implementation of the steps required to provide
a bowel cancer screening programme in New Zealand
•
delivery of surveillance to groups with increased risk
•
improvement of treatment and diagnostic services for all people with
bowel cancer
•
development and implementation of an evaluation framework for
the programme
•
monitoring progress with implementation
•
providing other advice on bowel cancer as requested.
Overseas data suggests that up to 8 percent of people who are screened
will have traces of blood in their sample. Of these, between 30 and 40
percent will have polyps and about one in ten of them will have cancer.
The BowelScreening pilot will determine whether this is the situation in
New Zealand.
International evidence suggests that bowel screening programmes can
save lives through early diagnosis and treatment. A 2008 Cochrane
review 13 suggests that the mortality rate from bowel cancer might be
12
http://www.hiqa.ie/media/pdfs/HTA_Outline_Summary_colorectal.pdf
13
Hewitson P, Glasziou P, Watson E, Towler B, Irwig L. 2008. Cochrane systematic review of colorectal
cancer screening using the fecal occult blood test (hemoccult): an update. 2008 Jun;103(6):1541-9.
Epub 2008 May 13. Department of Primary Health Care, University of Oxford, Oxford, United Kingdom.
55
reduced by between 14 and 16 percent (or likely to avoid approximately
1 in 6 colorectal cancer deaths) by use of a guaiac faecal occult blood test
(gFOBT). New Zealand is using a newer immunochemical faecal occult
blood test (iFOBT) which emerging evidence suggests may save more lives.
The bowel screening pilot will provide data so we can determine how many
lives could be saved in New Zealand.
A Māori Equity Advisory Group (MEAG) provided the Ministry with advice
and recommendations on reducing inequalities in treatment and outcomes
for all people.
» ORGANISED SCREENING FOR BOWEL CANCER
An organised approach to screening on a national basis has been proven to
be more successful at reducing incidence and mortality for certain diseases
than opportunistic screening.
The key difference between opportunistic screening and organised
population-based screening is that opportunistic screening does not
necessarily include the following essential components of an effective
screening programme:
•
coordination of all elements of the service
•
a screening register
•
an invitation and recall system
•
a multidisciplinary team approach to screening
•
close linkages with diagnostic and treatment services
•
specific operational policies, quality standards and ongoing monitoring
and quality assurance processes.
A reduction in mortality at a population level depends upon high levels of
participation and quality screening and follow-up services.
Organised screening is a complex process that has the potential to both
benefit and harm those who participate in the screening process. An
organised population-based screening programme for the early detection
of cancer differs from most health services in a number of respects. If
screening is to be offered there needs to be clear evidence that the
benefit to participants will outweigh the harm, and therefore clinical and
operational procedures need to be of the highest quality.
The screening process aims to identify early stage disease in ‘well people’
with no signs of disease. The boundaries of the population to participate
in an organised screening programme are identified by general risk factors
such as age and gender, by specified exclusion criteria, and international
evidence from randomised controlled trials.
56
An organised bowel screening programme has the potential to reduce
bowel cancer incidence and mortality by routinely screening a defined
population at regular intervals. Bowel cancer screening fulfils several
criteria of diseases that are amenable to population-based screening
programmes. Bowel cancer is a slow-growing tumour with a long
preclinical phase. Significant adenoma (>10mm) become bowel cancers
at a rate of roughly 1 percent per year and if left in situ, have a cumulative
risk of about 24 percent to become malignant at 20 years. The slow
development process from adenoma to cancer makes bowel cancer a
good example of where a screening intervention with a non-symptomatic
population can save lives.
» BOWEL SCREENING AND MĀORI
Although Māori are not a population with elevated risk of bowel cancer,
prevalence has increased over time, and Māori are at risk of not accessing
services at equitable rates.
To ensure Māori gain the maximum benefit from the BSP, two key
documents/frameworks have been used as guidance: the Māori Health
Strategy, together with its implementation plan, and Te Pae Māhutonga –
the framework for health promotion/public health.
HE KOROWAI ORANGA (MĀORI HEALTH STRATEGY)
The Māori Health Strategy and Implementation Plan14 identify the broad
approach to Māori health for the health system.
The following kaupapa are given:
14
•
affirming Māori processes – the strategy strongly supports Māori
holistic models and wellness approaches to health and disability. It
will also tautoko, or support, Māori in their desire to improve their own
health. He Korowai Oranga seeks to support Māori-led initiatives to
improve the health of whānau, hapū and iwi. The strategy recognises
that the desire of Māori to have control over their future direction is a
strong motivation for Māori to seek their own solutions and to manage
their own services
•
improving Māori outcomes – achieving this will mean a gradual
reorientation of the way that Māori health and disability services are
planned, funded and delivered in New Zealand. Government, District
Health Boards (DHBs) and the health and disability sector will continue
to have a responsibility to deliver improved health services for Māori,
which will improve Māori outcomes.
King A and Turia T. 2002. He Korowai Oranga Maori Health Strategy. Wellington: Ministry of Health,
Minister of Health. 2002. Whakatātaka - Māori Health Action Plan 2002-2005. Wellington: Ministry of
Health.
57
Four pathways for action are identified:
1.
development of whānau, hapū, iwi and Māori communities
2. Māori participation in the health and disability sector
3. effective health and disability services
4. working across sectors.
While all of these pathways are important, pathways 2 and 3 are of
particular relevance for the BSP.
TE PAE MĀHUTONGA
For effective implementation of a screening programme, Te Pae Māhutonga
framework provides a useful approach.
Te Pae Māhutonga is the name for the constellation of stars popularly
referred to as the Southern Cross. Te Pae Māhutonga has long been used as
a navigational aid and is closely associated with the discovery of Aotearoa
and then New Zealand. The constellation has four central stars arranged in
the form of a cross, and there are two stars arranged in a straight line which
point towards the cross. They are known as the two pointers.
Because it is an icon of New Zealand, and because Te Pae Māhutonga
has served as a guide for successive generations, it can also be used as a
symbolic map for bringing together the significant components of health
promotion, as they apply to Māori health, but also as they might apply to
other New Zealanders.
The four central stars can be used to represent the four key tasks of
health promotion and might be named to reflect particular goals of health
promotion: Mauriora, Waiora, Toiora and Te Oranga. The two pointers are
Ngā Manukura and Te Mana Whakahaere.
58
TABLE 15: GUIDANCE ON EFFECTIVE BOWEL SCREENING
FOR MĀORI
DIRECTIONS
QUESTIONS
IMPLICATIONS FOR BOWEL
SCREENING PROGRAMME
Ngā Manukura –
Leadership
Whose agenda are
you working to?
Do Māori have differential
outcomes for colorectal cancer?
What are the groups
and organisations who
will be allies?
Māori medical practitioners
Mauriora – cultural
identity
Te reo Māori resources
Advertising, promotional and
information resources in te reo
Māori
Waiora – physical
environment
Somewhat less
relevant for a
screening programme
Responsible use of resources
Toiora – healthy
lifestyles
Harm minimisation
Both the screening programme
and its target need to result in
reduced harm as measured in
Māori terms
Targeted
By Māori for Māori provision of
services
Culturally relevant
Use of a Hauora model, such as
that represented by Te Whare
Tapa Wha
Te Oranga –
participation in society
Participation in the
screening programme
Resources and incentives to
ensure participation
Te Mana Whakahaere –
autonomy
Control
Highly visible Māori leadership
Sensible, Māori-centric
measures of outcome
Development of measures of
participation, acceptability and
outcome
Māori nurses
Māori community health workers
59
Therefore, an effective bowel screening programme for Māori includes:
•
adoption of a Hauora model to represent health
•
building alliances with relevant Māori health organisations (such as the
Māori Medical Practitioners Association, Māori Nurses Organisation, and
Māori Development Organisations)
•
mechanisms (including prioritisation, resources and performance
incentives) to ensure Māori participation in the planning and provision
of the BSP
•
use of te reo Māori in information, health promotion and other materials
relating to the BSP
•
development and use of measures of success for the BSP in Māori
terms, as complementary measures.
TREATMENT OUTCOMES FOR MĀORI
Whether treatment of bowel cancer detected through the BSP will lead to
improved outcomes for Māori is a question that needs further analysis.
A recent paper, Ethnicity and management of colon cancer in New
Zealand: Do indigenous patients get a worse deal?15 concluded that Māori
New Zealanders with colon cancer were less likely to receive adjuvant
chemotherapy and experienced a lower quality of care compared with
non-Maori patients. The authors concluded that attention to health system
factors is needed to ensure equal access and quality of cancer treatment for
indigenous and ethnic minority populations.
Inequitable outcomes are indicated in a recent chartbook of Māori and
non-Māori cancer statistics,16 which analyses differences in cancer incidence,
mortality, stage at diagnosis and survival in Aotearoa/New Zealand, using
national cancer registrations and mortality data for the six-year period
1996–2001 (inclusive).
Bowel cancer was more common among non-Māori than Māori, but
mortality rates were similar for both populations. Māori males had a lower
likelihood of being diagnosed with bowel cancer than non-Māori females,
but a higher risk of death from bowel cancer.
Stage at diagnosis was unknown for a higher proportion of Māori bowel
cancer registrations (16 percent) compared with non-Māori (10 percent).
Around 40 percent were diagnosed at a regional stage of disease spread.
Māori were significantly less likely than non-Māori to be diagnosed at a
localised stage. The likelihood of Māori being diagnosed when the disease
had spread (distant stage) were two-thirds more than for non-Māori.
15
http://onlinelibrary.wiley.com/doi/10.1002/cncr.25127/full
16
Robson, B., G. Purdie, and D. Cormack, Unequal Impact: Māori and Non- Māori Cancer Statistics 19962001. 2006, Ministry of Health: Wellington.
60
Once diagnosed with bowel cancer, Māori were two-thirds more likely
than non-Māori to die from their cancer. Half the survival disparity can
be attributed to differences in stage at diagnosis. The higher risk of
death was significant among those diagnosed at a localised or regional
stage, and among those whose stage at diagnosis was not recorded.
In summary, non-Māori had higher rates of bowel cancer but, once
diagnosed, were less likely than Māori to die from their cancer. NonMāori were more likely than Māori to be diagnosed at an earlier stage
of disease spread, but significant survival disparities exist among
those diagnosed at a localised and regional stage. Bowel cancer is
an important cancer for both Māori and non-Māori. The reasons for
disparate outcomes should be investigated, including differential access
to diagnostic and staging services, and treatment pathways.
PART SEVEN: REFERENCES
AND FURTHER INFORMATION
62
» FURTHER READING
• Department of Public Health (Caroline Shaw, Ruth Cunningham,
Diana Sarfati). March 2008. Next Steps Towards a Feasibility Study
for Colorectal Cancer Screening in New Zealand: Report for the
Ministry of Health. Wellington: University of Otago.
• Ministry of Health (Colorectal Cancer Screening Advisory Group). November 2006. Reviewing population screening for colorectal
cancer in New Zealand: Report of the Colorectal Cancer Screening
Advisory Group. Ministry of Health (available on the Ministry of
Health website: www.moh.govt.nz).
• Ministry of Health. 2009. Suspected Cancer in Primary Care:
Guidelines for investigation, referral and reducing ethnic disparities.
(Available on the Ministry of Health website: www.moh.govt.nz.
Hard copies can be ordered by emailing [email protected] or
calling 04 496 2277.)
• New Zealand Guidelines Group. 2009. Surveillance and
Management of Groups at Increased Risk of Colorectal Cancer.
(Hard copies can be ordered through the New Zealand Guidelines
Group website
www.nzgg.org.nz/practice-tools/bowel-cancer)
• New Zealand Guidelines Group. 2011. Management of Early
Colorectal Cancer. (Hard copies can be ordered through the New
Zealand Guidelines Group website www.nzgg.org.nz/practice-tools/
bowel-cancer)
WEBSITES:
• http://www.cancerscreening.nhs.uk/bowel/
• http://www.bowelscreening.scot.nhs.uk/
63
» GLOSSARY
Adenoma – a non-cancerous growth in the lining of the bowel that can
progress to cancer.
Colonoscopy – a procedure which uses a flexible fibre-optic endoscope
to directly examine the bowel for polyps or cancer. It requires bowel
preparation in the form of diet restriction and laxatives in the preceding
days.
Cancer detection rate – the proportion of people screened in which cancers
are detected.
Double contrast barium enema – an X-ray examination using barium
sulphate and air to outline the contour of the large bowel.
Ethnicity – Statistics New Zealand describes ethnicity as “… the ethnic
group or groups that people identify with or feel they belong to. Ethnicity
is a measure of cultural affiliation, as opposed to race, ancestry, nationality
or citizenship. Ethnicity is self perceived and people can belong to more
than one ethnic group.”
Faecal occult blood test – a type of test that involves taking a sample or
samples of faecal matter and testing it for occult (unseen) blood or blood
products which may indicate the presence of pathology in the bowel. This
can be used as a screening test for colorectal cancer. The two main types
of faecal occult blood tests are guaiac and immunochemical.
False negative – a normal (negative) test result in a person who has the
target condition. This is important in quantifying the number of cancers
that will be missed by the screening test.
False positive – an abnormal (positive) result in a person who does not
have the target condition.
First degree relative – the parents, brothers, sisters or children of an
individual.
Flexible sigmoidoscopy – a flexible fibre-optic endoscope used to directly
examine the lower bowel for polyps or cancer.
Incidence – the number of new cases of a disease in a given population
during a given period of time. Incidence is usually expressed per 100,000
people per year.
Inequalities in health – differences in health status between groups that are
unnecessary, avoidable and unjust.
64
Interval cancer – a cancer that is diagnosed after a normal screening
test result was given and before the next scheduled screening
examination (or during some defined period after the screening test).
Interval cancers include a spectrum of cancers, from those which did
not exist or were undetectable at the previous round of screening to
those that were detectable but missed.
National Cancer Register – a population-based register of all primary
malignant diseases diagnosed in New Zealand, excluding squamous cell
and basal skin cancers.
Negative Predictive Value – the proportion of individuals with a normal
(negative) test result who do not have the target condition.
Opportunistic screening – screening initiated through practitioner offer
or patient request with no coordinated system of follow-up.
Organised screening – screening where all people eligible for screening
are systematically identified and offered screening, and centralised
systems are used for follow-up and quality monitoring.
Perforation – a complication of colonoscopy where a small hole is
accidentally made in the bowel wall.
Population register – a database holding selected information about
each member of the resident population in a defined geographical area.
Positive Predictive Value – the proportion of individuals with an
abnormal (positive) test result who have the target condition.
Prevalence – the number of cases of a specified disease in a given
population at a designated point in time.
Randomised controlled trial – an epidemiological experiment in which
subjects are randomly assigned into groups to receive or not receive
an experimental preventive or therapeutic treatment, intervention,
procedure or manoeuvre. Randomised controlled trial evidence of
benefit of screening is one of the criteria used to assess potential
screening programmes.
Second-degree relative – the aunts, uncles, grandparents,
grandchildren, nieces, nephews, or half-siblings of an individual.
Screening pathway – the sequence of steps involved in a screening
programme, which includes the promotion of the programme, the
identification and invitation of eligible participants, the screening test
itself, and appropriate diagnostic investigations and treatment for those
testing positive. (It is important to note that the offer of a screening
test in isolation is not a screening programme.)
65
Sensitivity – the proportion of individuals who have a target condition
who receive an abnormal (positive) test result. A screening test that is
more sensitive will pick up a greater proportion of those with the target
condition. However, it is possible that a more sensitive test may worsen
the trade-off between benefits and harms if the test picks up more cases
of inconsequential disease.
Socioeconomic position – the social and economic factors that influence
what position(s) individuals and groups hold within the structure of society
(e.g. someone’s social class, income or relative deprivation).
Specificity – the proportion of individuals who are free of the target
condition who are correctly identified by the screening test as being free of
the condition. If a new screening test is more specific (results in fewer false
positives) then the potential harm of screening may be reduced.
Surveillance – monitoring individuals known to have a disease or to be at
increased risk of a disease.
Test positivity rate – the proportion of people being tested who return a
positive result.
66
» BIBLIOGRAPHY
•
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Bird HA, Hill J, Haw WM et al. 1985. A comparison of fecal blood loss caused by
tenoxicam and piroxicam in normal healthy male volunteers. Curr Med Res Opin.
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•
Cole SR, Young GP. 2001. Participation in faecal occult blood test-based screening
for colorectal cancer is reduced by dietary restriction. Med J Aust 175:195-8.
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Crooke M. 2005. Faecal Occult Blood Tests. A presentation to the Colorectal
Cancer Screening Advisory Group.
•
Dybdahl JH, Daae LN, Larsen S, et al. 1984. Occult faecal blood loss determined
by a 51Cr method and chemical tests in patients referred for colonoscopy.
Gastroenterol. 19(2):245-54.
•
Fielding LP, Arsenault PA, Chapuis PH, et al. 1991. Clinicopathological staging
for colorectal cancer: an International Documentation System (IDS) and an
International Comprehensive Anatomical Terminology (ICAT). J Gastroenterol
Hepatol 6(4):325–44.
•
Hewitson P, Glasziou P, Watson E, Towler B, Irwig L. 2008. Cochrane systematic
review of colorectal cancer screening using the fecal occult blood test (hemoccult):
an update. 2008 Jun;103(6):1541-9. Epub 2008 May 13. Department of Primary
Health Care, University of Oxford, Oxford, United Kingdom.
•
Kerr J, Broadstock M, Day P, Hogan S. 2005. Effectiveness and Cost-effectiveness
of Population Screening for Colorectal Cancer. New Zealand Health Technology
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McDonald CA, Burford Y, Yuen AC, et al. 1984. Immunochemical detection of fecal
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Minister of Health. 2002. Whakatātaka - Māori Health Action Plan 2002-2005.
Wellington: Ministry of Health.
•
Minister of Health and Associate Minister of Health. 2002. He Korowai Oranga:
Māori Health Strategy. Wellington: Ministry of Health.
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Ministry of Health. 2009. Bowel Cancer Programme: Inclusion/Exclusion Criteria.
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Nakama H, Kamijo N, Fattah AS, Zhang B. 1998. Immunologic detection of
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Nakama H, Kamijo N, Fujimori K, et al. 1997. Relationship between fecal sampling times
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•
New Zealand Guidelines Group. 2004. Surveillance and Management of Groups at
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NHS Rapid Response Report, available at www.npsa.nhs.uk/rrr
•
Ouyang DL, Chen JJ, Getzenberg RH, et al. 2005. Noninvasive testing for colorectal
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Robertson JD, Maughan RJ, Davidson RJ. 1987. Fecal blood loss in response to exercise.
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•
Robson, B., G. Purdie, and D. Cormack, Unequal Impact: Māori and Non- Māori Cancer
Statistics 1996-2001. 2006, Ministry of Health: Wellington.
•
Rockey DC, Auslander A, Greenberg PD. 1999. Detection of upper gastrointestinal
blood with fecal occult blood tests. Am J Gastroenterol 94:344-50.
•
Young GP, Macrae FA, St John DJB. 1996. Clinical methods for early detection: Basis,
use and evaluation. In: Young GP, Rozen P, Levin B (eds). Prevention and early
detection of colorectal cancer. London: Saunders 241-70.
•
Young GP, St John DJ, Winawer SJ, Rozen P. 2002. Choice of faecal occult blood tests
for colorectal cancer screening: recommendations based on performance characteristics
in population studies: a WHO (World Health Organisation) and OMED (World
Organisation for Digestive Endoscopy) report. Am J Gastroenterol. 97(10):2499-507.
APPENDICES
69
» APPENDIX 1: PRE-INVITATION LETTER
<Person NHI>
<Date>
<Person Title><Person Name (First name, Family Name)>
<Person Address – all address lines>
Dear <Person Title> <Participant Family Name>
Free bowel screening programme
You are invited to take part in the free BowelScreening programme. The programme is being offered
to all men and women aged 50 to 74 who live in the Waitemata District Health Board area and who
are eligible for publicly funded healthcare. Your doctor, at <GP facility>, supports bowel screening.
The aim of the programme is to detect bowel cancers at an early stage, when they can be more
successfully treated. Bowel cancer can develop with few, if any, warning signs.
Enclosed is a booklet that will help you decide if bowel screening is right for you.
Next step
In about four weeks time, you will be sent a free test kit, with detailed instructions on how to use it.
The test is simple to do by yourself at home.
If you choose to take part in the screening programme, just complete the test and return the kit to
us. You will receive your results within three weeks.
If you don’t want to take part in the programme, please phone us on 0800 924 432.
Screening may not be right for everyone. Please call us now on 0800 924 432 if you:
•
have had a colonoscopy within the last five years
•
are on a bowel polyp or bowel cancer surveillance programme
•
have had or are currently being treated for bowel cancer
•
have had your large bowel removed
•
are currently being treated for ulcerative colitis or Crohn’s Disease
•
are currently awaiting bowel investigations arranged by your doctor.
More information
If you would like further information or assistance, please visit the BowelScreening website www.
BowelScreeningWaitemata.co.nz, call the BowelScreening programme on 0800 924 432 or talk to
your doctor.
Yours sincerely
Moira McLeod
Programme Manager
BowelScreening Programme
70
» APPENDIX 2: INVITATION LETTER
<Person’s NHI>
<Date>
<Person Title><Person Name (First Name, Family Name)
<Preferred Mailing Address>
<Person Address – all address lines>
Dear <Person Title> <Person Family Name>
Free bowel screening programme
You recently received a letter inviting you to complete a bowel screening test as part of the
BowelScreening programme. The programme is being offered to all men and women aged 50 to 74
who live in the Waitemata District Health Board area and who are eligible for publicly funded healthcare.
Your doctor, at <GP facility>, supports bowel screening.
Enclosed is your free bowel screening test kit and a booklet that may help you decide if bowel screening
is right for you.
Doing the test will take just a few minutes of your time. Please follow the test kit instructions carefully.
If you do not follow the instructions completely you may need to repeat the test. There is a checklist on
the back page of the test kit instruction leaflet that will help you check you have completed all the steps.
Results of the test
You will receive your results within three weeks. Your doctor or a nurse may contact you to discuss the
result. If you have not heard anything after this time, please call us on 0800 924 432.
Screening may not be right for everyone
Please call us on 0800 924 432 BEFORE doing the test if you:
•
have had a colonoscopy within the last five years
•
are on a bowel polyp or bowel cancer surveillance programme
•
have had or are currently being treated for bowel cancer
•
have had your large bowel removed
•
are currently being treated for ulcerative colitis or Crohn’s Disease
•
are currently awaiting bowel investigations arranged by your doctor.
If you would like further information or assistance, please visit the BowelScreening website www.
BowelScreeningWaitemata.co.nz, call the BowelScreening programme on 0800 924 432 or talk to your
doctor.
Yours sincerely
Moira McLeod
Programme Manager
BowelScreening Programme
PLEASE COMPLETE AND SIGN THE CONSENT FORM ON THE BACK OF THIS LETTER
71
» APPENDIX 3: CONSENT FORM
BowelScreening Programme Consent Form
Attach 1D Barcode Here
Removable Barcodes
for Samples
Surname
First Name
Middle Name
NHI Number
Gender
Date of Birth
Attach 2D Barcode Here
Phone Number
Participant Residential Address
Participant Postal Address
GP/Dr Name
GP/Dr Practice name
GP/Dr Street Address
Lab Use Only:

[ IFOB ]
Participant must complete all sections below
Write date sample collected:
If you do not wish your GP to receive
your test results please mark here:
Which ethnic group do you belong to?
Tick the boxes that apply
NZ European
Niuean
Maori
Chinese
Samoan
Indian
Cook Island Maori
Other (Specify)
Changes to current details if applicable:
Surname
First Name
Gender
Date of Birth
Phone: Work
Residential Address
Home
Mobile
Postal Address
GP/Dr Name
GP/Dr Address or Practice Name
Tongan
It’s important you are fully informed about all aspects of bowel screening before you decide to take part in
the BowelScreening programme, and do the bowel screening test.
By completing and returning this form and the test to the laboratory you:
•
agree to participate in the BowelScreening programme
•
have read, or had explained to you, information about the BowelScreening programme
•
understand that if blood is found in the sample provided, you will be advised to undertake further
diagnostic investigation
•
understand that the test will not detect all bowel cancers (studies show that FOBTs detect 70-80% of
cancers) and it is important to always watch for any symptoms of bowel cancer that may develop
•
agree that your GP/Primary healthcare provider will be notified of your test result unless you have
indicated in the tick box above that you do not want this to happen
•
agree that information collected about you is used for the purposes of monitoring and evaluation of the
bowel screening pilot.
More information on bowel screening and how we use your information is included in the booklet “All About
BowelScreening”. You can download a copy from www.bowelscreeningwaitemata.co.nz or phone us on
0800 924 432 and we will post one to you.
You may withdraw or suspend your participation in the programme at any time by contacting the
BowelScreening programme Coordination Centre on the above free phone number.
Signed
72
» APPENDIX 4: BOWELSCREENING
TEST KIT INSTRUCTIONS
Step 3 – Post the sample tube
• As soon as the sample has been collected,
put the sample tube into the zip-lock bag.
Make sure the bag is completely closed.
Finished?
Have you:
checked the consent form to ensure your details are correct?
included your contact phone numbers on the consent form?
included the date the sample was taken on the consent form?
signed the consent form?
placed the barcode on the sample tube?
• Place both the zip-lock bag with sample
tube, and the completed consent form,
into the Freepost envelope and seal it.
collected your bowel motion sample, placed it into the tube,
and made sure the tube is clicked shut?
washed and dried your hands?
placed the sample tube in the zip-lock bag and sealed it?
put the consent form and the completed sample tube into
the Freepost envelope provided?
sealed the envelope and posted it?
• Keep the sample in a cool place until
you post it.
• Don’t leave it in a warm place or in direct
sunlight, as your sample could spoil.
• Post the Freepost envelope as soon
as possible.
• Avoid posting on Friday, Saturday or
Sunday.
Any questions?
If you have any questions call the BowelScreening
programme on 0800 924 432. Local Waitemata DHB
trained staff will be there to help you, and your call will
be confidential.
Test Kit
Instructions
You can also visit www.BowelScreeningWaitemata.co.nz
or talk to your doctor.
September 2011 HP5402
Test kit instructions
Before you start
The bowel screening test is used to detect tiny traces of
blood in your bowel motions. This may be an early warning
that something is wrong with your bowel. Please complete
this test as soon as possible.
• You don’t need to change your diet or medication before
doing the test.
To do the bowel screening test you need to collect a small
sample from your bowel motion.
Step 2 – Collect the sample
• Wait until you feel a bowel motion coming on.
• Try to do the test early in the week and post it straight away.
Then the sample will reach us in good condition.
• For best results, try to urinate and flush the
toilet before you do your bowel motion. This
will stop the sample collection sheet from
getting too wet and sinking.
• You can do the test at any time of day.
• To prevent any postal delays, it’s best not to send
on a Friday, Saturday or Sunday.
• Then place some toilet paper on the surface
of the water in the toilet bowl.
The test is quick, clean and simple for you to do at home.
• Store the kit away from sunlight and heat.
If you need any help or have any questions, call the
BowelScreening programme on 0800 924 432.
Don’t do the test:
• Place the sample collection sheet on top of
the toilet paper.
In the kit you should have:
• if blood is present in your urine or visible in the toilet bowl
after a bowel motion. If this happens, talk to your doctor.
• during your period, or within three days either side of it
• Do the bowel motion on the sample
collection sheet in the toilet bowl.
Doing the test
1
Consent form
with barcode label
2
Step 1 – Consent form
Sample collection sheet
(to put in toilet bowl)
• Complete the consent form.
• Sign and date the consent form, being careful to include the
date the sample was taken.
• Make sure your phone numbers are added to the consent form.
• Remove the barcode label from the consent form and stick
it along the flat side of the sample tube, below the printed
serial number. You don’t need to write anything on the
sample tube.
3
Sample tube
4
Zip-lock bag
for sample tube
If anything is missing from your test kit
please call us on 0800 924 432.
5
Freepost
envelope
• Collect the sample immediately - before the
sample collection sheet sinks.
• To collect the sample, twist the lid off the
sample tube. The lid has a small collection
stick attached.
• Scrape the tip of the collection stick over the
surface of the bowel motion a few times to
ensure the tip of the stick is covered. Only a
very small amount of sample is required.
• Take extra care when putting the collection
stick back into the sample tube. Push to click
shut and do not remove the lid again.
• Flush the toilet with your bowel motion and
the sample collection sheet in it.
• Wash and dry your hands thoroughly.
73
» APPENDIX 5: NEGATIVE RESULT LETTER
<Date>
<Person NHI>
<Person Title> <Person Name (First Name, Family Name>
<Person Address – all addresses lines >
Dear <Person Title> <Person Family Name>
Your bowel screening test result
Thank you for completing the bowel screening test sent to you recently as part of the free
BowelScreening programme. Your test result was normal.
This means that you do not need any further tests or treatment at this time. However no test is 100
percent accurate and it is important you watch for any bowel symptoms that may develop. Please
read the enclosed leaflet for further information.
Talk to your doctor if you notice blood in your bowel motions or a change in your normal pattern of
going to the toilet that continues for several weeks (such as diarrhoea, constipation, or a feeling that
your bowel often doesn’t empty completely). You will be invited to complete another bowel screening test in two years if you still live in the
Waitemata District Health Board area, and are still within the eligible age range of 50 to 74.
Regular bowel screening can detect bowel cancers at an early stage, when they can be more
successfully treated.
If you need more information, go to the BowelScreening website
www.bowelscreeningwaitemata.co.nz, call 0800 924 432 or talk to your doctor.
Yours sincerely
Mike Hulme-Moir
Clinical Director
BowelScreening Programme
74
» APPENDIX 6: POSITIVE RESULT LETTER
<Date>
<Person NHI>
<Person Title><Person Name (First Name, Family Name)
<Preferred Mailing Address>
<Person Address – all address lines>
Dear <Person Title> <Person Family Name>
Your bowel screening test result
Thank you for completing the bowel screening test sent to you recently as part of the BowelScreening
programme.
By now you will have been contacted about your test result and will know that some blood was
present in the sample you provided. This doesn’t mean that you have bowel cancer. There could
be a number of reasons why blood was found and most are not related to cancer.
The next step is to have another test to find the cause of the blood. A nurse from the BowelScreening programme will organise this for you and will provide you with
detailed information about the test that is right for you, what it involves and what you need to do next.
The information in the enclosed leaflet may also be useful.
If you need more information, go to the BowelScreening website
www.bowelscreeningwaitemata.co.nz, call 0800 924 432 or talk to your doctor.
Yours sincerely
Mike Hulme-Moir
Clinical Director
BowelScreening Programme
75
» APPENDIX 7: PARTICIPANT INFORMATION BOOKLET ‘ALL ABOUT BOWELSCREENING’
2
3
4
» What is the FREE
BowelScreening
programme?
» Why is bowel screening
important?
Bowel screening can help save lives by
detecting bowel cancer at an early stage,
when it can be treated more successfully.
This is important, as there may be no
warning signs that bowel cancer is
developing.
BowelScreening is a free programme
to check people for early signs of
bowel cancer.
BowelScreening is being offered to
everyone aged 50 to 74 living in the
Waitemata District Health Board (DHB)
area who is eligible for publicly funded
healthcare. It is a four-year programme
to test whether bowel screening should
be introduced throughout New Zealand.
The booklet explains how the screening test
can help detect bowel cancer at an early stage
when it can be more successfully treated, and
provides information about the potential risks
and benefits of screening.
For more information on
the BowelScreening programme, please visit:
www.BowelScreeningWaitemata.co.nz
Or call the programme on
0800 924 432
BowelScreening
It is important you have all the information
you need to make a decision about
whether the test is right for you. If you
need more information, you can call the
BowelScreening programme on 0800 924 432,
go to the BowelScreening website
www.BowelScreeningWaitemata.co.nz,
or talk to your doctor.
All About bowelScreening
Or speak to your doctor.
The cells can turn into a polyp, which may
then turn into cancer over a number of
years. It can take a long time before the
cancer grows and spreads to other parts
of the body. Bowel screening provides an
opportunity to find bowel cancer and treat
it early.
Bowel screening can also detect polyps
(growths). These are not cancers, but
they may develop into cancers over time.
Polyps can be easily removed, reducing
the risk of bowel cancer developing.
Everyone eligible to take part in the
programme will automatically be sent an
invitation letter, a consent form and a free
bowel screening test kit, with detailed
instructions on how to use it.
This booklet tells you about bowel screening.
It may help you decide whether to take part in
the free BowelScreening programme and take a
bowel screening test.
5
» What is the bowel?
The bowel is part of our food digestive
system. It is divided into the small bowel
and the large bowel, and connects the
stomach to the anus (bottom) where
waste material (called a bowel motion
or faeces) is passed out of the body. The
function of the large bowel is to finish
digesting food by absorbing water and
salt. The large bowel is where cancer most
commonly develops.
If you don’t want to take part in the bowel
screening programme, and don’t want to
receive a test kit, please contact us now
on 0800 924 432 and let us know. If you
complete the test kit and return it to us
with the consent form, your sample will be
tested – even if you have not signed the
consent form.
» What is bowel cancer?
If you have any bowel cancer
symptoms (see page 6) talk to
your doctor. Don’t wait for your
test kit to arrive.
Bowel cancer is also called colon, rectal
or colorectal cancer. Bowel cancer is a
malignant growth that develops inside the
bowel. A malignant growth occurs when
normal cells on the inside wall of the bowel
become abnormal and grow out of control.
» How common is bowel
cancer?
New Zealand has one of the highest bowel
cancer rates in the world. Bowel cancer is
the second highest cause of cancer death
in New Zealand. More than 2800 people are
diagnosed with bowel cancer every year
and more than 1200 die from the disease.
September 2011 HP5401
6
7
8
9
You should talk to your doctor before deciding
whether to do the bowel screening test if:
» What are the symptoms of
bowel cancer?
Common signs and symptoms of bowel
cancer may include:
»
»
a change in your normal pattern of
going to the toilet that continues for
several weeks (such as diarrhoea,
constipation, or feeling that your
bowel doesn’t empty completely)
blood in your bowel motion.
Although these symptoms are usually
caused by other conditions it’s important
to get them checked by your doctor.
» Who should do the bowel
screening test?
Bowel screening is for people who have
no obvious signs or symptoms of bowel
cancer. If you have any symptoms of bowel
cancer, you should talk to your doctor
BEFORE deciding whether to take part in
the BowelScreening programme.
» Who shouldn’t do the
screening test?
have had a colonoscopy within the
last five years
»
are on a bowel polyp or bowel cancer
surveillance programme
»
have had or are currently being treated
for bowel cancer
»
have had your large bowel removed
»
are currently being treated for
ulcerative colitis or Crohn’s Disease
»
are currently awaiting bowel
investigations arranged by your doctor.
12
The most common test used to check your
bowel is a colonoscopy. A colonoscopy
involves a specially trained doctor putting
a thin tube into your anus to see if there
are any problems with your bowel. The
tube has a very small camera on the end.
If the doctor sees any polyps in your
bowel, they will usually remove them and
send them to the laboratory for testing.
Removing polyps is generally painless.
The colonoscopy takes about 30 minutes
and is usually done as a day-patient
procedure at the hospital. You will be given
medication that makes you very sleepy
and helps to minimise any discomfort.
If you need a colonoscopy, you will need
to prepare your bowel the day before by
drinking a special preparation that will
give you diarrhoea. This ensures you have
a clear bowel, so the doctor can see any
problems. Good bowel preparation is very
important because it gives the doctor
the best chance of finding any problems,
especially small polyps.
» Are there any risks from
a colonoscopy?
Colonoscopy is considered a safe
procedure with few risks and is generally
straightforward for most people. However,
as with most medical procedures, there is a
risk of complications. There is a very small
risk that colonoscopy will cause serious
bleeding, or damage or tears to your bowel
and you may need an operation to fix it.
Colonoscopy can detect 95 out of 100
cancers and polyps.
» Do I need to pay for the
colonoscopy, other tests
or treatment?
The screening test and any follow-up
tests or treatments organised through the
BowelScreening programme are free.
» What if I am diagnosed with
bowel cancer?
If you are diagnosed with bowel cancer,
you will be referred for treatment to
the hospital. The main treatment for
bowel cancer is surgery. In some cases,
chemotherapy or radiotherapy may be
recommended.
» How successfully can bowel
cancer be treated?
People who are diagnosed with bowel
cancer and receive treatment when it is at
an early stage have a 90 percent chance
of long term survival. If there is a delay in
diagnosis and treatment, and the cancer is
more advanced, it is harder to cure. Bowel
screening can detect cancer early, when it
can be more successfully treated.
»
you or a close family member have
been diagnosed with bowel cancer at
a young age (under 55 years)
»
there is concern that you and your
family may have a genetic bowel cancer
syndrome
»
there is a known genetic bowel cancer
syndrome in your family
»
you have had extensive inflammatory
bowel disease such as ulcerative colitis
for more than 10 years.
Bowel cancer is more common as you get
older, particularly from the age of 50. Bowel
cancer affects more men than women. A
diet relatively high in red meat and animal
fats, and low in fruit, vegetables and fibre,
may contribute to the development of
bowel cancer. Lack of exercise is also a risk
factor for bowel cancer.
13
» What further tests might
I need?
you have a history of a number of
family members over two or three
generations being affected with bowel
cancer
» Who is most at risk of
bowel cancer?
Screening is not appropriate for everyone.
You should not be part of a bowel
screening programme if you:
»
»
No screening test is 100% accurate. There
is a chance that cancer can be missed if
there was no bleeding from it when you
did the bowel screening test. That’s why
it’s important to have a screening test
every two years. Bowel cancer may also
start to slowly develop in the two years
between screening tests. It’s important to
talk to your doctor if you notice any signs
or symptoms of bowel cancer (see page 6)
at any time between screening tests.
The bowel screening test is an
immunochemical faecal occult blood test
(iFOBT). It can detect tiny traces of blood
in your bowel motions. This may be an
early warning that something is wrong with
your bowel. If there is blood in your bowel
motion it doesn’t mean you have bowel
cancer, but you should have a further test
to find the cause of the blood.
» What does the test involve?
The test is free and is quick, clean and
simple to do by yourself at home.
You will be sent a free test kit, with
detailed instructions on how to use it.
The test kit contains everything you need.
To do the test, you will need to collect a
small sample from your bowel motion. This
is easy to do if you follow the instructions
in the kit.
» Who can access my
information?
Your doctor will be told that you are taking
part in the BowelScreening programme,
but will only be told the results of your
tests if you agree to it.
The information on your consent form and
your screening results will be used by the
BowelScreening programme to provide
you with any necessary follow-up, including
inviting you to take part in the programme
again in two years. If you tell us you don’t
want to take part in the programme, we
will keep a record of your details to make
sure that you are not invited in the future.
Information about any further assessment
or treatment for bowel cancer that you
may need will be collected by Waitemata
DHB. This information will be held securely
by Waitemata DHB and the Ministry of
Health and only authorised people will have
access to your information. This will include
people who are evaluating the programme.
Personal information and data are
collected, stored, accessed and destroyed
to a standard that complies with the Health
Information Privacy Code 1994.
» If I am not satisfied with the
service I have received, how
do I make a complaint about
the programme?
The Code of Health and Disability
Services Consumers’ Rights allows
you to make a complaint in a way that
is appropriate for you. If you want to
make a complaint about this programme
or the service you have received, you
can phone the BowelScreening programme
on 0800 924 432 for more information
about the best options for you.
You can also get help from the Office of
the Health and Disability Commissioner.
Call 0800 112 233 or visit www.hdc.org.nz
For more information on the
BowelScreening programme, please visit
www.BowelScreeningWaitemata.co.nz
call the programme on 0800 924 432
or speak to your doctor.
» When will I get my results?
You will receive your results within three
weeks of returning your completed bowel
screening kit. If you don’t receive your
results within three weeks, please call
0800 924 432.
» What do the results of the
bowel screening test mean?
If no blood is found in your sample, this
means that you don’t need any further
tests at this time. You will be invited back
to do another bowel screening test in two
years, if you still live in the Waitemata DHB
area, and are still aged between 50 and 74
years. If no blood is found in your sample,
it doesn’t guarantee that you don’t have
bowel cancer, or that you will never develop
it in the future. If you develop any signs or
symptoms of bowel cancer (see page 6),
it’s important you talk to your doctor.
If blood is found in your sample, it doesn’t
mean that you have bowel cancer. The
blood may be caused by polyps, or other
minor conditions such as haemorrhoids
(piles). It does mean you will need a
further test to find the cause of the blood.
Your doctor or a nurse will contact you to
discuss your results and the type of test
that is right for you.
When you have completed the test, just
put it in the zip-lock bag provided, then
into the Freepost envelope along with the
signed and completed consent form. Post
it as soon as possible. Keep the sample in a
cool place until you post it. To prevent any
postal delays, it’s best not to send it on a
Friday, Saturday or Sunday.
» How will I get my results?
You will receive a letter with your results
and information about what this means
for you. You may also receive a phone call
from your doctor or a nurse.
15
It’s important that you are fully informed
about all aspects of bowel screening
before you decide to take part in the
BowelScreening programme, and do the
bowel screening test. You can find more
information on the BowelScreening website
www.BowelScreeningWaitemata.co.nz
11
» How accurate is the test?
» What is a bowel screening
test?
14
» Do I have all the information
I need?
10
Only a small number of people
will have blood in their sample
and of these, an even smaller
number will be found to have
bowel cancer.
76
» APPENDIX 8: PARTICIPANT INFORMATION LEAFLET ‘BOWELSCREENING – YOUR QUICK REFERENCE GUIDE’
This information will be held securely by
Waitemata DHB and the Ministry of Health
and only authorised people will have access to
your information. This will include people who
are evaluating the programme.
Personal information and data are collected,
stored, accessed and destroyed to a standard
that complies with the Health Information
Privacy Code 1994.
» How do I make a complaint
about the programme?
» Do I have all the information
I need?
It’s important that you are fully informed
about all aspects of bowel screening before
you decide to take part in the BowelScreening
programme, and do the bowel screening test.
More information on bowel screening, including
potential risks and benefits, is included in the
booklet All About BowelScreening.
You can download a copy from:
www.BowelScreeningWaitemata.co.nz
or phone us on 0800 924 432 and
we will post a copy to you.
» Who can access my information?
Your doctor will be told that you are taking part
in the BowelScreening programme, but will only
be told the results of your tests if you agree to it.
The information on your consent form and
your screening results will be used by the
BowelScreening programme to provide you
with any necessary follow-up, including inviting
you to take part in the programme again in two
years. If you tell us you don’t want to take part
in the programme, we will keep a record of your
details to make sure that you are not invited in
the future.
The Code of Health and Disability Services
Consumers’ Rights allows you to make a
complaint in a way that is appropriate for you.
If you want to make a complaint about this
programme or the service you have received,
you can phone the BowelScreening
programme on 0800 924 432 for more
information about the best options for you.
You can also get help from the Office of the
Health and Disability Commissioner.
Call 0800 11 22 33 or visit www.hdc.org.nz
For more information on the BowelScreening
programme, please visit
www.BowelScreeningWaitemata.co.nz
or call the programme on 0800 924 432
or speak to your doctor.
Information about any further assessment or
treatment for bowel cancer that you may need
will be collected by Waitemata DHB.
For more information on
the BowelScreening programme, please visit:
www.BowelScreeningWaitemata.co.nz
BowelScreening
Your Quick reference Guide
Or call the programme on
0800 924 432
Or speak to your doctor.
September 2011 HP5400
5735GSL BScreen Test Brochure_Final_fa.indd 1-5
18/08/11 12:35 PM
» What is a bowel screening test?
This brochure is a quick guide to the
BowelScreening programme. More detailed
The bowel screening test is used to detect tiny
traces of blood in bowel motions. These may
be an early warning that something is wrong
with your bowel. It doesn’t mean you have
bowel cancer, but you should have a further
test to find the cause of the blood.
information can be found in the booklet
All About BowelScreening. You can download
a copy from the BowelScreening website
www.BowelScreeningWaitemata.co.nz
or phone us on 0800 924 432 and we will
post a copy to you.
» How do I complete the bowel
screening test?
» What is the FREE
BowelScreening programme?
The test is simple to do
by yourself at home.
BowelScreening is a free programme to
check people for early signs of bowel cancer.
BowelScreening is being offered to all men
and women aged 50 to 74 who live in the
Waitemata District Health Board (DHB)
area and who are eligible for publicly
funded healthcare.
It is part of a four-year programme to test
whether bowel screening should be
introduced throughout New Zealand.
Bowel screening is for people
who have no obvious signs or
symptoms of bowel cancer.
The FREE test kit contains everything you
need and comes with detailed instructions
on how to use it.
» Why is bowel screening
important?
New Zealand has one of the highest bowel
cancer rates in the world.
Bowel screening can help save lives by detecting
bowel cancers at an early stage, when they can
be treated more successfully. This is important, as
there may be no warning signs or symptoms that
bowel cancer is developing.
People aged over 50 are more likely to develop
bowel cancer, especially men.
Bowel cancer is the second highest cause of
cancer death in New Zealand. More than 2800
people are diagnosed with bowel cancer every
year and more than 1200 die from the disease.
5735GSL BScreen Test Brochure_Final_fa.indd 6,9-10
You will need to collect a small sample from
your bowel motion. To do this, just follow the
instructions in the kit. Put the sample in the
zip-lock bag provided and post it, along
with the completed consent form, in the
Freepost envelope provided.
» When will I get my results?
You will receive your results within three weeks
of returning your completed kit. You may also
receive a phone call from your doctor or a nurse.
If you don’t receive your results within three
weeks, please call 0800 924 432.
» What do the results of the
bowel screening test mean?
If no blood is found in your sample, this means
that you don’t need any further tests at this
time. You will be invited back to do another
bowel screening test in two years time, if you
still live in the Waitemata DHB area, and are still
aged between 50 and 74 years.
If blood is found in your sample, it doesn’t
mean that you have bowel cancer. It does mean
you will need a further test to find the cause of
the blood. Your doctor or a nurse will contact
you to discuss the results and the type of test
that is right for you.
» What further tests
might I need?
The most common test used to check your
bowel is a colonoscopy. A colonoscopy uses
a very small camera on the end of a thin tube
to examine the lining of your bowel, to see
if there are any problems.
» Do I need to pay for any
further tests and treatment
if I need them?
The screening test and any follow-up tests
or treatments organised through
the BowelScreening programme are free.
» How accurate is the test?
No screening test is 100% accurate. It’s
important to always watch for any symptoms
of bowel cancer that may develop.
Talk to your doctor if you notice:
»
blood in your bowel motions
»
a change in your normal pattern of going
to the toilet that continues for several
weeks (such as diarrhoea or constipation)
»
a feeling that your bowel doesn’t
empty completely.
» Who shouldn’t do the
screening test?
Screening is not appropriate for everyone.
You shouldn’t be part of a bowel screening
programme if you:
»
have had a colonoscopy within the last
five years
»
are on a bowel polyp or bowel cancer
surveillance programme
»
have had or are currently being treated
for bowel cancer
»
have had your large bowel removed
»
are currently being treated for ulcerative
colitis or Crohn’s Disease
»
are currently awaiting bowel investigations
arranged by your doctor.
18/08/11 12:35 PM
77
» APPENDIX 9: PARTICIPANT INFORMATION LEAFLET ‘BOWELSCREENING – ALL CLEAR’
Personal information and data are collected,
stored, accessed and destroyed to a
standard that complies with the Health
Information Privacy Code 1994.
» If I am not satisfied with the
service I have received, how
do I make a complaint?
The Code of Health and Disability Services
Consumers’ Rights allows you to make a
complaint in a way that is appropriate for
you. If you want to make a complaint
about this programme or the service
you have received, you can phone
the BowelScreening programme on
0800 924 432 for more information
about the best options for you.
You can also get help from the Office of
the Health and Disability Commissioner.
Call 0800 112 233 or visit www.hdc.org.nz
For more information on the
BowelScreening programme, please visit
www.BowelScreeningWaitemata.co.nz
call the programme on 0800 924 432
or speak to your doctor.
For more information on
the BowelScreening programme, please visit:
www.BowelScreeningWaitemata.co.nz
BowelScreening
All Clear
Or call the programme on
0800 924 432
AN EXPLANATION OF YOUR TEST RESULTS
Or speak to your doctor.
September 2011 HP5408
Your bowel screening test result
shows that no blood has been found
in your bowel motion.
This means that you don’t need any
further tests at this time.
You will be invited back to do
another bowel screening test in two
years, if you still live in the Waitemata
District Health Board area, and are
still aged between 50 and 74 years.
In the meantime, if you develop any
signs or symptoms of bowel cancer,
it is important you talk to your doctor.
» How accurate is my result?
» What are the symptoms of
bowel cancer?
Common signs and symptoms of bowel cancer
may include:
»
a change in your normal pattern of going to
the toilet that continues for several weeks
(such as diarrhoea, constipation, or feeling
that your bowel doesn’t empty completely)
»
blood in your bowel motion.
Although these symptoms are usually caused
by other conditions it is important to get them
checked by your doctor.
» Who is most at risk of bowel
cancer?
Bowel cancer is more common as you get older,
particularly from the age of 50. It affects more
men than women.
You are more at risk of developing bowel cancer if:
No screening test is 100% accurate.
If no blood is found in your sample, it doesn’t
guarantee that you don’t have bowel cancer,
or that you will never develop it in the future.
There is a chance that cancer can be missed
if there was no bleeding from it when you did
the bowel screening test. Bowel cancer may
also start to slowly develop in the two years
between screening tests.
That’s why it’s important to have a screening
test every two years and to talk to your doctor
if you notice any symptoms of bowel cancer.
»
you have a history of a number of family
members over two or three generations
being affected with bowel cancer
»
you or a close family member have been
diagnosed with bowel cancer at a young
age (under 55 years)
»
there is concern that you and your family
may have a genetic bowel cancer syndrome
»
you have had bowel cancer or certain types
of bowel polyps
»
you have had extensive inflammatory bowel
disease such as ulcerative colitis for more
than 10 years.
If you are concerned about your family history
of bowel cancer or your risk of developing
bowel cancer, please talk to your doctor.
» How can I reduce my overall
risk of cancer?
»
Maintain a healthy body weight.
»
Eat a low fat, high fibre diet with plenty
of fresh fruit and vegetables.
»
Exercise regularly.
»
Avoid smoking.
» Who can access my bowel
screening information?
Your doctor will be told that you are taking part
in the BowelScreening programme, but will
only be told the results of your tests if you have
agreed to this.
The information on your consent form and
your screening results will be used by the
BowelScreening programme to provide you with
any necessary follow-up, including inviting you to
take part in the programme again in two years.
If you tell us you don’t want to take part in the
programme, we will keep a record of your details
to make sure that you are not invited in the future.
Information about any further assessment
or treatment for bowel cancer that you may
need will be collected by Waitemata DHB. This
information will be held securely by Waitemata
DHB and the Ministry of Health and only
authorised people will have access to your
information. This will include people who are
evaluating the programme.
78
» APPENDIX 10: PARTICIPANT INFORMATION LEAFLET ‘BOWELSCREENING – FURTHER INVESTIGATION’
» Do I have all the information
I need?
It’s important that you are fully informed about
all aspects of bowel screening, including the
screening test and any further tests you may
need. You can find more information on the
BowelScreening website
www.BowelScreeningWaitemata.co.nz, or talk
to your doctor.
» Who can access my information?
Information about any further assessment
or treatment for bowel cancer that you may
need will be collected by Waitemata DHB. This
information will be held securely by Waitemata
DHB and the Ministry of Health and only
authorised people will have access to your
information. This will include people who are
evaluating the BowelScreening programme.
Personal information and data are collected,
stored, accessed and destroyed to a standard
that complies with the Health Information
Privacy Code 1994.
» If I am not satisfied with the
service I have received, how
do I make a complaint?
The Code of Health and Disability Services
Consumers’ Rights allows you to make a
complaint in a way that is appropriate for
you. If you want to make a complaint about
this programme or the service you have
received, you can phone the BowelScreening
programme on 0800 924 432 for more
information about the best options for you.
You can also get help from the Office of
the Health and Disability Commissioner.
Call 0800 112 233 or visit www.hdc.org.nz
For more information on the BowelScreening
programme, please visit
www.BowelScreeningWaitemata.co.nz
or call the programme on 0800 924 432
or speak to your doctor.
For more information on
the BowelScreening programme, please visit:
www.BowelScreeningWaitemata.co.nz
Or call the programme on
0800 924 432
BowelScreening
Further Investigation
AN EXPLANATION OF YOUR TEST RESULTS
Or speak to your doctor.
September 2011 HP5407
Your bowel screening test result
shows that some blood has been
found in your bowel motion.
This does NOT mean you have
bowel cancer.
It does mean you will need a further
test to find the cause of the blood.
The blood may be caused by polyps
(growths) or other minor conditions
such as haemorrhoids (piles).
» What happens next?
Your doctor or a nurse will contact you to
discuss your results and what further test
you may need. They will explain what the
test involves and answer any questions
you may have.
» How do I make an appointment
for this test?
If you decide to have the test, the nurse will
arrange an appointment for you and will
provide further information about what to
do next.
» What further test might I need?
The most common test used to check your
bowel is a colonoscopy. A colonoscopy involves
a specially trained doctor putting a thin tube
into your anus (bottom) to see if there are any
problems with your bowel.
The tube has a very small camera on the end.
If the doctor sees any polyps in your bowel they
will generally remove them and send them to
the laboratory for testing. Removing polyps
is usually painless.
The polyps will be checked for any abnormal
cells that might be cancerous.
»
Fewer than one in 100 people will be found
to have cancer.
»
About four in 10 will have polyps which if
removed may prevent cancer developing.
» Will I need to stay in hospital?
No. The colonoscopy is usually done as a
day-patient procedure at the hospital and
takes about 30 minutes.
If you need a colonoscopy you will need to
prepare your bowel the day before by drinking
a special preparation that will give you diarrhoea.
This ensures you have a clear bowel so the
doctor can see any problems. Good bowel
preparation is very important because it gives the
doctor the best chance of finding any problems,
especially small polyps.
» Are there any risks from a
colonoscopy?
Colonoscopy is considered a safe procedure
with few risks and is generally straightforward
for most people. However, as with most medical
procedures, there is a risk of complications.
There is a very small risk that colonoscopy will
cause serious bleeding, or damage or tears
to your bowel and you may need an
operation to fix it.
Colonoscopy can detect 95 out of 100 cancers
and polyps.
» Will it hurt?
You will be given medication that makes
you very sleepy and helps to minimise any
discomfort.
» What happens if I miss my
colonoscopy appointment?
It’s very important you let us know as soon
as possible if you are unable to come for your
colonoscopy on the day and time arranged so
we can organise another appointment for you.
If you miss your appointment, or
need to make another time, please
phone us on 0800 924 432.
» Do I need to pay for the
colonoscopy, other tests
or treatment?
The screening test and any follow-up
tests or treatments organised through the
BowelScreening programme are free.
» What if I am diagnosed with
bowel cancer?
If you are diagnosed with bowel cancer you
will be referred for treatment to the hospital.
The main treatment for bowel cancer is
surgery. In some cases chemotherapy or
radiotherapy may be recommended.
» How successfully can bowel
cancer be treated?
People who are diagnosed with bowel cancer
and receive treatment when it is at an early
stage have a 90 percent chance of long term
survival. If there is a delay in diagnosis and
treatment, and the cancer is more advanced,
it is harder to cure. Bowel screening can
detect cancer early, when it can be more
successfully treated.
79
» APPENDIX 11: PEOPLE AT INCREASED
RISK OF BOWEL CANCER
People at increased risk fall into two groups: those already identified as
being at increased risk, and those identified as being at increased risk
through participation in the BSP.
The following table shows the criteria for categorising a person with
increased risk of bowel cancer.
INCREASED RISK
INDIVIDUALS
MODERATE RISK
INDIVIDUALS
Individuals with: i
A family history of
bowel cancer, with:
• a personal
history of bowel
cancer
• high-risk
colorectal
adenomas,
multiple polyps
• extensive
inflammatory
bowel disease
such as
ulcerative colitis
for more than 10
years
• one first-degree
relative with
bowel cancer
diagnosed before
the age of 55
years, or
• two first-degree
relatives on the
same side of the
family with bowel
cancer diagnosed
at any age
HIGH RISK INDIVIDUALS
A family history of:
• Familial adenomatous polyposis
(FAP), hereditary non-polyposis
colorectal cancer (HNPCC) or other
familial CRC syndromes
• one first-degree relative, plus two
or more first- or second-degree
relatives, all on the same side of the
family, with a diagnosis of CRC at
any age
• two first-degree relatives, or one
first-degree relative plus one
second-degree relatives, all on
the same side of the family with
a diagnosis of CRC, and one such
relative diagnosed with CRC
under the age of 55 years, or
developed multiple bowel cancers,
or developed an extracolonic
tumour suggestive of HNPCC (i.e.
endometrial, ovarian, stomach, small
bowel, upper-renal tract, pancreas
or brain)
• at least one first- or second-degree
relative diagnosed with CRC in
association with multiple bowel
polyps
• a personal history of, or one firstdegree relative with, CRC diagnosed
under the age of 55 years,
particularly where colorectal tumour
immunohistochemistry has revealed
loss of protein expression for one of
the mismatch repair genes (hMLH1
or hMSH2)
i
New Zealand Guidelines Group. Surveillance and Management of Groups at Increased Risk of
Colorectal Cancer. Wellington: New Zealand Guidelines Group; 2004.
80
A significant proportion of people already at increased risk will
either not know that they are at increased risk, or will know that
they are and/or are not receiving the level of surveillance and
monitoring currently recommended within New Zealand’s clinical
guidelines for suspected cancer in primary care.ii People should
be referred to the NZFGCR if familial bowel cancer is suspected
(Appendix 12).
Advising people to see a health professional rather than participate
in screening may be a barrier for people who have poor access
to primary care. On the other hand, not excluding people with
symptoms suggestive of bowel cancer may give them false
reassurance that a negative test means they can continue to not
seek help for their symptoms, and includes people within the BSP
who potentially are not at average risk of bowel cancer. To address
this situation:
•
information regarding factors of increased risk (including a
family history of bowel cancer) is included in the leaflet ‘All
About BowelScreening’. People are advised to discuss risk
factors with their primary care practitioner
•
individuals identified at increased risk of bowel cancer should
not participate in the BSP
•
consideration should be given to the management of people,
and the data associated with them, who have already had
colonoscopy services outside of the public health sector.
PEOPLE IDENTIFIED AS AT INCREASED RISK
THROUGH SCREENING
People who have high-risk adenomas or polyps detected through
the BSP are no longer eligible for screening, and will be exited to a
parallel programme for surveillance of people at increased risk.
For these people, the clinical guidelines outline how they should
be monitored on an ongoing basis (mostly with surveillance
colonoscopy at specified intervalsiii).
ii
NZ Guidelines Group (2004) Surveillance and Management of Groups at Increased Risk of
Colorectal Cancer: Wellington: NZGG
iii
NZ Guidelines Group (2004) Surveillance and Management of Groups at Increased Risk of
Colorectal Cancer Wellington: NZGG
81
SYMPTOMS SUGGESTIVE OF BOWEL CANCER
Clinical guidelines for suspected cancer in primary careiv:
RECOMMENDATIONS
COLORECTAL CANCER: URGENT REFERRAL
(WITHIN TWO WEEKS)
GRADE
A person aged 40 years and older reporting rectal bleeding with
a change of bowel habit towards looser stools and/or increased
stool frequency persisting for 6 weeks or more should be
referred urgently to a specialist*
C
A person aged 60 years and older with rectal bleeding persisting
for 6 weeks or more without a change in bowel habit and without
anal symptoms should be referred urgently to a specialist*
C
A person aged 60 years and older with a change in bowel
habit to looser stools and/or more frequent stools persisting
for 6 weeks or more without rectal bleeding should be referred
urgently to a specialist*
C
A person presenting with a palpable rectal mass (intraluminal
and not pelvic) should be referred urgently to a specialist,
irrespective of age. Note that a pelvic mass outside the bowel
should be referred urgently to a urologist or gynaecologist*
C
A man of any age with unexplained iron deficiency anaemia and
a haemoglobin of 110 g/L or below, should be referred urgently
to a specialist*
C
Unexplained iron deficiency anaemia means unrelated to
other sources of blood loss, for example, non-steroidal antiinflammatory drug treatment or blood dyscrasia
A non-menstruating woman with unexplained iron deficiency
anaemia and a haemoglobin of 100 g/L or below, should be
referred urgently to a specialist*
C
Unexplained iron deficiency anaemia means unrelated to
other sources of blood loss, for example, non-steroidal antiinflammatory drug treatment or blood dyscrasia
Grades indicate the strength of the supporting evidence, rather than the importance of the
recommendations – refer to Appendix A in the guidelines for grading details.
* Recommendation consistent with: Referral guidelines for suspected cancer. NICE clinical
guideline 27. 2005.
iv
New Zealand Guidelines Group 2009. Draft Suspected cancer in primary care: Guidelines for
investigation, referral and reducing ethnic disparities. Wellington: NZGG
82
GOOD PRACTICE POINTS
COLORECTAL CANCER: URGENT REFERRAL
(WITHIN TWO WEEKS)
A person presenting with a right-sided abdominal mass should
be referred urgently for a surgical opinion
ü
A menstruating woman with unexplained iron deficiency
anaemia* and a haemoglobin of 100 g/L or below, should be
referred urgently to a specialist
ü
* Unexplained iron deficiency anaemia means unrelated to other
sources of blood loss, for example, heavy menstrual bleeding,
non-steroidal anti-inflammatory drug treatment or blood
dyscrasia
Opinion of the Guideline Development Team, or feedback from consultation within New Zealand
where no evidence is available.
83
» APPENDIX 12: NZ FAMILIAL GASTROINTESTINAL CANCER REGISTRY
The NZ Familial Gastrointestinal Cancer Registry (NZFGCR) is a national
Ministry of Health funded service with offices in Auckland, Wellington
and Christchurch. The team consists of family history assessors,
gastroenterologists, colorectal surgeons, oncologists and geneticists.
The NZFGCR facilitates the identification and management of familial
gastrointestinal cancer syndromes. A service for assessing individuals
at increased risk of developing bowel cancer is a prerequisite to the
introduction of a population bowel screening programme.
WHO TO REFER TO THE NZFGCR?
Individuals:
•
With two or more close relatives on the same side of the family with
colorectal cancer (CRC)
•
With a personal or family history of a first-degree relative with
bowel cancer diagnosed at or under the age of 50 years
•
With a family history of a suspected or known familial
gastrointestinal cancer/polyp syndrome, e.g. familial adenomatous
polyposis, or hereditary nonpolyposis colorectal cancer
•
Potentially at high risk for developing bowel cancer as defined
in the guidelines for surveillance and management of groups at
increased risk for colorectal cancer (CRC) www.nzgg.org.nz
WHAT DOES THE NZFGCR DO?
•
Offers assessment of bowel cancer risk for people with a family
history of gastrointestinal cancer
•
Facilitates the diagnosis of hereditary cancer by confirming the
family history
•
Offers surveillance recommendations
•
Co-ordinates surveillance for high-risk families
•
Offers specialist management advice
•
Provides information for specialists and families on familial
gastrointestinal cancer
84
NZFGCR CONTACT INFORMATION
NATIONAL/ AUCKLAND OFFICE
Auckland City Hospital
PO Box 92024, Auckland 1142
Phone: 09 307 8991
Freephone: 0800 554 555 (if outside Auckland)
Fax: 09 307 4978
Email: [email protected]
www.bowelscreeningwaitemata.co.nz
`