Breast Cancer Advocacy Coalition

1
Progress in establishing best practice clinical
guidelines for breast cancer in New Zealand
Libby Burgess 10th June 2006
2
Overview

• Best Practice Clinical Guidelines
• What are they?
• Why do we need them?
• Australian Guidelines and Clinical Updates
• NZ Guidelines
• Fit with Cancer Control Strategy
• BCAC advocacy on Guidelines
• Benefits of consumer (patient/survivor)
  involvement

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Evidence-based clinical practice guidelines

• Valuable resources guiding the work of health
  professionals
• Promote awareness of the most effective
  strategies based on the latest
• evidence
• Improve the processes of care for patients,
  reducing errors and variation,
• providing a consistent high quality of care
• Improve patient outcomes
• Provide cornerstones of accountability and
  facilitate learning by medical
• practitioners
• Regular updating needed to incorporate new
  knowledge
• Monitoring needed to ensure uptake by
  practitioners

4
Why we need breast cancer guidelines in NZ

• To achieve
• Early detection, accurate diagnosis,
  appropriate,
• timely treatment
• Consistency of high quality care throughout NZ
• Best possible outcomes for patients

5
Why we need breast cancer guidelines in NZ

• Currently many inconsistencies exist around New
  Zealand, e.g.
• GP and specialist views on screening
• Access to screening
• GP response to symptoms
• Availability of multi-disciplinary medical team
• Surgical treatment (e.g. mastectomy vs breast
  conservation)
• Radiotherapy (e.g. local boost or not)
• Waiting times to see a specialist, receive
  surgery, chemo radiotherapy
• Drug access
• Histology and tests performed
• Availability of reconstruction
• Differences in access regionally and racially
• Maori women
• 21 more likely to be diagnosed with breast
  cancer
• 30 less likely to be diagnosed early
• 68 more likely to die from it
• Robson, Purdie Cormack, 2006. Unequal Impact
  Maori and non-Maori Cancer Statistics 1996 2001
  www.moh.govt.nz

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Australian Breast Cancer Guidelines

• The investigation of a new breast symptom - a
  guide for general practitioners (2006)
• Advice about familial aspects of breast cancer
  and epithelial ovarian cancer a guide for
  health professionals (2006)
• Breast fine needle aspiration cytology and core
  biopsy a guide for practice (2005)
• Clinical practice guidelines for the psychosocial
  care of adults with cancer (2005)
• Multidisciplinary meetings for cancer care - a
  guide for Health Service Providers (2005)
• The clinical management of DCIS, LCIS, atypical
  hyperplasia of the breast (2003)
• Produced by Australias National Breast Cancer
  Centre www.nbcc.org.au

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Australian Breast Cancer Guidelines

• Clinical practice guidelines for the management
  and support of younger women with breast cancer
  (2003)
• The management of the woman with metastatic
  breast cancer (2003)
• Breast imaging a guide for practice (2002)
• Clinical practice guidelines for the management
  of early breast cancer (2001)
• Clinical practice guidelines for the management
  of advanced breast cancer (2001)
• The pathology reporting of breast cancer, a guide
  for pathologists, surgeons, radiologists and
  oncologists (2001)
• Radiotherapy and breast cancer (1999)
• Produced by Australias National Breast Cancer
  Centre www.nbcc.org.au

8
Australian Clinical Updates

• Inform clinicians of the latest advances in
  knowledge, rapidly incorporated into practice
• Fatigue in long-term breast carcinoma survivors
  (2006)
• Diagnostic performance of digital versus film
  mammography for breast
• cancer screening (2005)
• Efficacy of prophylactic mastectomy in women
  with unilateral breast
• cancer (2005)
• Adjuvant chemotherapy in older and younger women
  with lymph node-
• positive breast cancer (2005)
• Radiation Therapy and Chemotherapy vs
  Chemotherapy alone 20-year
• results of the British Columbia randomized
  trial (2005)
• Anastrozole vs Tamoxifen Impact on Quality of
  Life (ATAC 2 Year Assessment)
• (2004)

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Australian Clinical Updates

• Delay in starting radiotherapy does it make any
  difference? (2004)
• History revisited Did NSABP TRIAL B04 get it
  right? (2004) Written by a NZ doctor!
• Adjuvant radiation and/or tamoxifen after surgery
  for DCIS (2004)
• Dose-dense chemotherapy as adjuvant treatment in
  early breast cancer (2004)
• Chemoprevention is the jury still out? (2004)
• Fractionation in radiation therapy perhaps one
  size doesnt fit all (2003)
• Tailoring adjuvant treatment for post-menopausal
  node-negative breast cancer (2003)
• Aromatase inhibitors ready for centre stage?
  (2003)
• Hormone replacement therapy is it a treatment
  of the past? (2003)
• Managing menopausal symptoms in women following
  breast cancer treatment (2002)

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NZ Guidelines are woefully inadequate

• NZ Guidelines
• Guidelines for the early detection of breast
  cancer (1999)
• Dont reflect government policy of screening
  45-69yr band
• RNZCGP sought MoH funding for an update,
  unsuccessful
• Guidelines for the surgical management of breast
  cancer (1997)
• Written prior to sentinel node biopsy and other
  advances
• Comparative survival data
• NZ 28 worse than Australia (Skegg McCredie,
  2002)

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Guidelines fit with Cancer Control Strategy

• Purposes
• Reduce incidence impact of cancer
• Reduce inequalities wrt cancer
• Principles
• Activities of high quality
• need standards guidelines, monitoring
  evaluation
• Goals
• Ensure effective screening and early detection to
  reduce cancer incidence and mortality
• need guidelines for referral and ongoing
  assessment
• Ensure effective diagnosis and treatment to
  reduce cancer morbidity and mortality
• need defined standards for diagnosis, treatment
  and care consistently applied guidelines
  monitoring of their use
• Important area of action
• the development, implementation and ongoing
  refinement of national and regional standards,
  guidelines and protocols.

12
Guidelines fit with Cancer Control Action Plan

• Goal 3 Ensure effective diagnosis and treatment
  of cancer to reduce morbidity and mortality
• Obj 1 Provide optimal treatment for those with
  cancer
• Obj 2 Develop defined standards for diagnosis
  treatment and care for those with cancer
• Establish timeframes for timely diagnosis
  treatment monitor and record reduce access
  delays develop referral guidelines
• Develop guidelines for diagnosis, treatment and
  management of cancers
• Develop protocols and guidelines regionally and
  nationally

13
Guidelines BCAC action

• Researched the topic to identify existing NZ
  guidelines compared these to Australian
  resources
• Advocated the urgent need for development
  updating of BC guidelines to NZ Guidelines Group
  (Aug 05)
• To be based on existing Aussie and other
  guidelines
• Sought support for this initiative by writing to
  15 medical bodies, 9 MPs and other interested
  parties (Aug 05)
• Received supportive responses (Sept 05)
• From wide range of medical bodies
• From NZGG though they claimed they would need a
  sponsor before acting
• MPs were busy getting elected
• Met with and lobbied Dr John Childs, Principal
  Advisor, Cancer Control (Sept 05)
• For Breast Cancer Guideline development
  Consumer input Regular updating Monitoring to
  ensure implementation

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Guidelines BCAC action

• Received a positive response from John Childs
• Breast cancer guidelines will be developed first
  and will provide a model for other cancers (Sept
  05)
• Briefed key decision-makers in Wellington (on all
  4 BCAC issues) (Dec 05)
• Minister of Health, selected MPs, health
  officials medical practitioners
• Regular contact with John Childs, requesting
  receiving updates, providing new info e.g. new
  Scottish guidelines but progress slow. By June
  06
• NZGG has developed a proposal for cancer
  guideline development including breast
• will adapt recent international guidelines
• will consult stakeholders
• contract to be signed July 2006
• guideline to be completed Sept. 2007

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Guidelines BCAC ongoing action

• Advocating to have consumer involvement in
  guideline development (and at governance level of
  Cancer Control Council)
• Invited to send a breast cancer patient advocate
  delegate to northern region DHB consultation
  group
• No access to higher levels yet
• Building Maori capability (Carlene friends) to
  enable networking so we can consult include
  Maori women, identify advocacy targets, help
  close the gaps
• Need to devise effective strategies for beating
  bureaucratic resistance to
• timely progress
• consumer/patient/advocate involevment

16
Guidelines benefits of consumer input

• NZGG discussion doc Effective Consumer Voice and
  Participation for New Zealand
• Better decision making prioritising
• Better alignment with needs of population
• Decisions better when made by those closely
  affected
• Services of higher quality and more acceptable
• Resources better used
• Feedback on effectiveness of policies services
  improved
• Greater consumer choice
• Utilise community skills knowledge
• Identify potentially contentious areas
• Bring together different points of view
• Represent different values in decision-making
• More holistic, human-centred approach
• Greater equity
• Incorporate power richness of lay persons
  conceptions of health illness
• Dwyer 1989

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Guidelines benefits of consumer input

• Intrinsic benefit redistribution of power
  resources
• Greater democracy, enhances citizen human
  rights
• Builds positive relationships with the public,
  increasing confidence and trust
• Greater accountability of medical professionals
  and government
• Improves community access to info knowledge
  about health health services
• Increases learning of consumer government
• Empowers consumers, voice for disadvantaged
• Governments engage directly with consumers
• Devolved decision-making
• Social capital
• Legitimation and compliance
• Many elements
• Dwyer 1989

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The value of consumer participation in Cancer
Control incl. guideline development

• Experience of cancer
• We know how it feels to be diagnosed with this
  deadly disease
• First-hand knowledge of existing services - what
  is good, what needs improvement and what is
  missing
• Its personal, not just hypothetical
• Our networks inform us of the experiences of
  others with cancer
• Were well-informed
• Motivation and passion to drive improvements
• We genuinely want to contribute, and care about
  the outcome

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The value of consumers in participating in
establishment of NZ cancer guidelines

• Independence of professional/government bodies
  their constraining elements, e.g.
• Budgetary constraints
• Influential leaders and their views
• Interdisciplinary/departmental/organisational
  competition for resources/status
• Patch protection
• We will keep our eye on the ball. We can see the
  bigger picture We are patient-focused
• Participation in the community that will be
  served by improvements
• These are our people. Our advocacy is trusted.
  Changes we have helped to bring about are more
  likely to be adopted