Libby Burgess 10 th June 2006

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

3. 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 • Māori 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: Māori and non-Māori Cancer Statistics 1996 – 2001 www.moh.govt.nz

6. 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 Australia’s National Breast Cancer Centrewww.nbcc.org.au

7. 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 Australia’s National Breast Cancer Centrewww.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) • Radiotherapy with tamoxifen after lumpectomy for early breast cancer – • does it make a difference for women in different age groups? (2004) • Letrozole after tamoxifen in early breast cancer. (2004) • Produced by Australia’s National Breast Cancer Centrewww.nbcc.org.au

9. 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 doesn’t 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) • Managing hot flushes in women treated for breast cancer (2002) • Produced by Australia’s National Breast Cancer Centrewww.nbcc.org.au

10. NZ Guidelines are woefully inadequate • NZ Guidelines • Guidelines for the early detection of breast cancer (1999) • Don’t 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)

11. 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

14. 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 withJohn 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

15. 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 Māori capability (Carlene & friends) to enable networking so we can consult & include Māori 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. 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 • It’s personal, not just hypothetical • Our networks inform us of the experiences of others with cancer • We’re well-informed • Motivation and passion to drive improvements • We genuinely want to contribute, and care about the outcome

17. 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