KEEPING ABREAST OF FUTURE NEED:

KEEPING ABREAST OF FUTURE NEED: A REPORT INTO THE GROWING DEMAND FOR BREAST CARE NURSES australian healthcare & hospitals association

FOREWORD The demand for breast cancer nursing care in Australia is growing, not only due to the increasing number of new breast cancer diagnoses each year, but also decreased mortality rates, an ageing population and improved patient survival. Keeping Abreast of Future Need: A Report Into The Growing Demand For Breast Care Nurses explores the growing need for this vital service and seeks to identify the number of breast care nurses required across the nation both now and into the future. We know breast care nurses are essential in improving outcomes for people diagnosed with breast cancer by acting as patient advocates, coordinating care, and ensuring their physical, psychological and emotional needs are met. For this reason, over the last decade, the McGrath Foundation has been working towards the shared vision that every person experiencing breast cancer should have access to a specialised Breast Care Nurse, no matter where they live or what their financial situation. Whilst there have been significant falls in the mortality rate of breast cancer owing to earlier detection, and better treatment there has not been a similar decline in the number of people diagnosed. Year on year the number of people living with a previous breast cancer diagnosis is growing from 159,325 in 2008 to a projected 209,200 in 2017. This report is the first step in identifying gaps in service over the next five years, so that strategies to address this need are prioritised ensuring assistance is available to breast cancer patients no matter where they live or their financial situation. It is clear that as demand rises we need to work collaboratively to address the challenges of meeting this growing national need. Petra Buchanan CEO, McGrath Foundation 2

INTRODUCTION BREAST CANCER IS THE MOST COMMONLY DIAGNOSED CANCER IN WOMEN The McGrath Foundation was founded with a clear goal: ensuring that every family experiencing breast cancer in Australia has access to a Breast Care Nurse (BCN). After a decade of working towards achieving this goal, the McGrath Foundation commissioned external research to assist with its expansion strategy, and to identify the future areas of need for BCNs in Australia to support the growing number of families experiencing breast cancer. This research helps map current disease prevalence against resources, and identifies key gaps and priority areas requiring services. Compiled by JustHealth Consultants, part of the Australian Healthcare and Hospitals Association, this research is an in depth look at BCNs across the country, and their essential role in the cancer experience. The report examines the growing need, the current gap in service provision, and presents a compelling case for future models of care. 3

BREAST CARE NURSE LANDSCAPE The BCN role emerged in the 1990s in response to significant gaps identified in the ability of existing health services to meet the information and support needs of women with breast cancer. The diagnosis, treatment and ongoing care of people experiencing breast cancer is increasingly complex, with BCNs playing an integral role in coordination of care and the provision of information and support. The BCN role has evolved over the past decade and will continue to do so to reflect the changing breast cancer treatment landscape. A BCN takes a holistic approach to a person s psychosocial and physical health during a breast cancer experience. Research tells us that, at a minimum, BCNs provide their patients with: support; education; counselling; advice; resources; care; public advocacy; management; and research. 1 This support is provided across the breast cancer experience: from the early days of diagnosis, to survivorship or to metastatic (secondary) cancer/s, if they occur. BCNs provide a continuum of care that leads to a more personalised and coordinated approach for people experiencing breast cancer, increased participation in clinical trials, and better access to information. 2 The importance of a BCN cannot be underestimated. In 2003, 98 per cent of a surveyed group of women said the availability of a BCN would affect their choice of hospital, with almost half (48 percent) declaring they would only recommend a hospital with a BCN. 3 Further, single centre based studies revealed 90 per cent of women found BCNs were helpful to talk to and displayed an awareness of women s needs, through reassurance and practical information. 3 Previous studies have indicated that support from a BCN has an impact on reducing hospital admissions or readmissions and/or unplanned emergency department visits. 5 4

GROWING INCIDENCE A number of factors impact the community need for BCNs, including the growing incidence of the disease, improved survival rates, the increasingly complex treatment trajectory, the need for services to support those with secondary disease, the challenges of geographical variations and underserved populations, as well as an ageing population. Breast cancer continues to be a major cause of disease burden nationally, with one in eight women in Australia diagnosed with breast cancer before the age of 85. 6 This year in Australia, 15,600 women and 145 men will be diagnosed with breast cancer, 7 with 3,065 people predicted to die from this disease. 8 In 2020, this number will increase to 17,210 people receiving a diagnosis of breast cancer across the nation. It is the most commonly diagnosed cancer in women making up 12.4 per cent of new cancer diagnoses. 9 While breast cancer can occur in women of all ages, it predominately affects women over 45, peaking in the 65 69 age bracket (1,734 per 100,000 females). However, incidence alone is an insufficient measure of the number of Australians living with breast cancer and the burden that this cancer places on the health system. 5

SURVIVORSHIP While the number of people diagnosed with breast cancer is growing, the prognosis for people in Australia with breast cancer is better than ever before, with the most recent mortality rate decreasing to 21.9 deaths per 100,000 women a 30 per cent drop from 1982 figures. 10 The five year survival rate is also significantly improved: Australian women now have a 90 per cent chance of surviving within five years of a breast cancer diagnosis. At the end of 2008 there were 159,325 people living who had been diagnosed with breast cancer in the previous 27 years. 11 In NSW alone the number of breast cancer survivors aged 18 84 years has increased over 150 per cent, while nationwide, by 2017, it has been predicted that there will be 209,200 women living with a previous breast cancer diagnosis, many of whom will require treatment or post treatment monitoring and related care. 12 Research demonstrates that women who have had early breast cancer may have a number of unmet needs or ongoing issues that need to be addressed following treatment. 13 With her help, support and listening she has aided my recovery and made it more bearable. She followed up my treatment and kept in touch with my GP. She provided wonderful support in an emotional time. Erna, breast cancer patient With increased rates of survival, there is a growing need for survivorship care to be included in the post treatment setting. As BCNs provide support during this phase as well, further resources are required to meet this additional need. 6

METASTATIC BREAST CANCER An additional area of need is an increased focus on women with secondary or metastatic breast cancer. BCNs have reported that they do not have the right resources or skills to treat women with secondary cancers, 14 yet the use of a specialised metastatic nurse is highly valued by breast cancer patients and their health care providers. 15 Secondary breast cancer is akin to a chronic disease requiring constant treatment and care, meaning those affected need additional support highlighting an increased need for funding and focus in this area. Patients with metastatic breast cancer and their families/carers require specialist nursing care and information in regards to emotional and psychological health, treatment options and coordination of care and referrals including to palliative care services for symptom management and end of life care. McGrath Breast Care Nurse, Canberra, ACT 7

GEOGRAPHICAL COMPLEXITY Variations in care also occur relative to the context in which the care is delivered, particularly related to the geographical location and available services. Around 30 per cent of Australian women diagnosed with breast cancer live outside of a major city. 16 There are logistical and practical challenges for people diagnosed with breast cancer living in rural Australia, with most needing to travel to major centres for some of their treatment; requiring higher coordination needs to be met by BCNs. Inequity of care between rural and metropolitan services is evidenced by the lower survival rates in areas of remoteness. In major cities, five year survival rates are at 90 per cent, compared to 84 per cent for women living in remote and very remote areas. 17 A breast cancer diagnosis is challenging enough, but for patients living in regional and rural areas it s layered with the anxiety of having to travel long distances for treatment which can add an enormous physical and financial burden. McGrath Breast Care Nurse, Port Lincoln, SA 8

CULTURAL DIVERSITY & CARE Along with the evolving complexities of the breast cancer landscape, there are groups within our communities that have different care needs, influencing the care delivery model. Aboriginal and Torres Strait Islander (Indigenous) women are significantly less likely to be diagnosed with breast cancer than non Indigenous Australian women (81 and 103 per 100,000, respectively), 18 but there is a significant and worrying gap between the five year survival rate of Indigenous women and non Indigenous women (69 and 83 percent, respectively). 19 And while it is beyond the scope of this research to identify the issues and needs of culturally and linguistically diverse (CALD) communities, it is reasonable to assume that this subset have high support and information needs requiring an additional layer of complexity to the delivery of care to these communities. Every culture deals with illness in different ways. I need to communicate clearly with patients so they understand what their diagnosis means and the options available to them. This is always more challenging where language or cultural barriers exist. McGrath Breast Care Nurse, Bankstown, NSW 9

RESEARCH FINDINGS The goal of this research was to ascertain the number of BCNs required to ensure every Australian diagnosed with breast cancer has access to a nurse throughout their breast cancer experience. The methodology for estimated BCN workforce projections utilised the following data items: 1. Average number of times a BCN comes into contact with a patient throughout their breast cancer experience (occasions of service (OOS) per client / patient) 2. Annual breast cancer incidence plus the average breast cancer reoccurrence rate 3. Average BCN patient case load per week (OOS per BCN) 4. Average Full Time Equivalent (FTE) of the Australian Breast Care Nursing workforce This research has identified that in 2015, demand for BCNs is far outstripping supply. Currently, there are an estimated 279 BCNs working across Australia, with an estimated need for 79 additional BCNs. In order to predict the number of BCNs required by 2020 the same methodology was applied using projected incidence and population growth. 10

This reveals the projected gap in BCN services will grow by 38 per cent with a shortage of 109 BCNs predicted by 2020. Additional funding to provide this essential service should be considered with some urgency. The table below demonstrates the methodology, BCN headcount requirements and gap in service between 2015 and 2020. YEAR 2015 2016 2017 2018 2019 2020 INCIDENCE RATE 113.5 113.6 113.6 113.7 113.7 113.8 NEW CASES 15,600 15,930 16,250 16,570 16,890 17,210 PER CENT OF EXISTING PATIENTS REQUIRING FURTHER CARE 15 15 15 15 15 15 ONGOING PATIENTS 2,340 2,390 2,438 2,486 2,534 2,582 TOTAL PATIENTS PER YEAR 17,940 18,320 18,688 19,056 19,424 19,792 AVERAGE OOS PER PATIENT 13 13 13 13 13 13 TOTAL OOS PER YEAR 233,220 238,154 242,938 247,722 252,506 257,290 OOS/FTE BCN/WEEK 20 20 20 20 20 20 ADJUSTED FOR 0.31 PER CENT ANNUAL PRODUCTIVITY GAIN 20 20.06 20.12 20.19 20.25 20.31 OOS/FTE BCN/YEAR 920 923 926 929 931 934 REQUIRED BCN FTE 253.50 258.06 262.43 266.77 271.09 275.37 AVG BCN FTE 0.71 0.71 0.71 0.71 0.71 0.71 REQUIRED BCN HEADCOUNT 358 364 370 376 382 388 FTE GROWTH 4.56 4.37 4.34 4.31 4.28 BREAST CARE NURSE GAP 79 85 91 97 103 109 Beyond the national gap, the research also sought to determine geographical priority areas for BCNs across Australia. Based on incidence, population and the current BCN workforce, seven priority regions were identified. These are: Nepean Blue Mountains Northern Sydney Western Sydney Northern Adelaide Eastern Melbourne South Eastern Melbourne Far North Queensland 11

RESEARCH FINDINGS Within this research, the additional demand for services received further validation from those with the greatest understanding of the current supply and demand: BCNs and breast cancer service providers. Of 122 BCNs surveyed, less than one third felt that the demand for service was currently being met, and 90 per cent expected the demand for services to increase. This was supported by 32 breast cancer service providers (mainly hospitals) with none expecting a decrease in demand for service. This perception may be in part related to not only the increased number of new breast cancer diagnoses, along with the increased requirements for ongoing care needs, but also due to the evolution of the model of care and number of contacts that are currently being delivered by BCNs. The National Breast Cancer Centre (now Cancer Australia) report Specialist breast care nurses: an evidence based model for Australian practice, published in 2000, outlined a pathway of five contacts between a BCN and a person newly diagnosed with breast cancer across a 12 week period. 20 This contrasts with the current research which indicates that BCNs have on average 13 patient contacts across the early breast cancer setting. This increased amount of contact between a BCN and a person with breast cancer demonstrates that care has changed over time, with an evolving model of care being required to deliver comprehensive care in today s breast cancer settings. As the complexity of the treatment trajectory increases, the number of contacts varies and the workforce requirement also varies. I feel privileged to have a highly skilled specialist nurse available to me. My nurse has attended to my care pre and postsurgery and has given reassurance, support and comfort. Her capacity to liaise with doctors, surgeons and oncologists has proven invaluable. I couldn t imagine my journey without her. Suzanne, breast cancer patient 12

CONCLUSION: A COMPELLING NEED This research demonstrates a clear and compelling need for more Breast Care Nurses in Australia. This is not a need that can be fulfilled by one charity, or by a single governmental body. It is a need that requires collaboration, and must be tackled with a sense of urgency as the numbers of those diagnosed with breast cancer requiring the services of a BCN continues to grow. Whilst there have been significant falls in the mortality rate of those with breast cancer owing to earlier detection, and better treatment there has not been a similar decline in the number of women diagnosed. Combined with an evolving model of care, due to increased needs and complexity of treatment, the role of the BCN is expanding, incorporating survivorship needs and the needs of people with secondary breast cancer, meaning that the current supply does not meet the demand for BCNs. Since the creation of the McGrath Foundation ten years ago 105 McGrath Breast Care Nurses (MBCN) have been funded nationwide, supporting more than 36,000 families experiencing breast cancer. The cost of funding the existing 105 MBCNs each year is $13.3m. The McGrath Foundation is focused on creating new BCN positions and supporting more families through increased fundraising. However, to fund the current MBCN workforce plus the additional 109 nurses needed by 2020, it is estimated to cost $27.1m per year, a 104 per cent increase. As demand rises, the McGrath Foundation cannot take on the challenge of meeting this growing, national need alone; we will need the support of Governments, corporations, businesses, and individual donors is needed to address the increased gap in service and growing demand. The need is clear: Australia has a critical gap in breast care nursing services which is set to widen by 38 per cent in the next five years. ANNUAL GROWTH IN REQUIRED NURSE POSITIONS NATIONAL BREAST CARE NURSE GAP 79 85 91 97 103 109 2015 2016 2017 2018 2019 2020 13

GLOSSARY OF TERMS BCN: Breast Care Nurse MBCN: McGrath Breast Care Nurse FTE: Full Time Equivalent Metastatic: Secondary breast cancer (incurable) OOS: Occasions of Service i.e. the number of times a BCN has contact with a patient during their breast cancer experience ENDNOTES 1 White, K. et al. Describing the role of breast nurse in Australia. European Journal of Oncology Nursing 1998; 2(2):89 98. 2 National Breast Cancer Centre s Specialist Breast Nurse Project Team. An evidence-based specialist nurse role in practice: a multi-centre implementation study. European Journal of Cancer Care 20 03; 12:91-97. 3 ibid. 4 Szwajcer A, et al. Evaluating key dimensions of the breast care nurse role in Australia. Cancer Nurse 2004; 27(1):79 84. 5 Paynter H, et al. Evaluation of the McGrath Foundation s Breast Cancer Nurses Initiative. The Australian Journal of Cancer Nursing 2013;14(2):4 9. 6 Australian Institute of Health and Welfare 2012. Cancer series no.71. Cat. no. CAN 67. Canberra: AIHW. 7 Australian Institute of Health and Welfare 2014. Cancer in Australia: an overview, 2014. Cancer series no. 78. Cat. no. CAN 75. Canberra: AIHW. 8 Australian Institute of Health & Welfare www.aihw.gov.au 9 ibid. 10 Australian Cancer Incidence and Mortality (ACIM) Books All Cancers combines for Australia (ICD10 C00 C97, D45 46, D47.1, D47.3) www. aihw.gov.au/acim books [Accessed July 2015]. 11 Australian Institute of Health and Welfare 2012. Cancer series no.71. Cat. no. CAN 67. Canberra: AIHW. 12 Yu et al. BMC Cancer 2014, 14:936 http://www.biomedcentral.com/1471 2407/14/936. 13 Mann B, et al. Survivorship program for patients completing definitive breast cancer treatment. Victorian Cancer Survivorship Program: Pilot Project; Final report 2013. At http:// www.petermac.org/sites/default/ files/education/breast%20cancer%20 Survivorship%20Project%20 %20 VCSP%20Final%20Report.pdf 14 Reed E, et al. A survey of provision of breast care nursing for patients with metastatic breast cancer implications for the role. European Journal of Cancer Care 2010;19(5):575 580. 15 Watts K, et al. A specialist breast care nurse role for women with metastatic breast cancer: enhancing supportive care. Oncology Nursing Forum 2011;38(6):627 631. 16 Cancer Australia. Report to the nation breast cancer 2012, Cancer Australia, Surry Hills, NSW, 2012. 17 Australian Institute of Health and Welfare. Cancer survival and prevalence in Australia: period estimates from 1982 to 2010. Cancer Series no. 69. Cat. no. CAN 65. Canberra: AIHW; 2012. 18 Australian Institute of Health and Welfare 2012. Cancer series no.71. Cat. no. CAN 67. Canberra: AIHW. 19 ibid. 20 National Breast Cancer Centre, 2000. Specialist Breast Nurses: an evidenced based model for Australian practice. National Breast Cancer Centre, Camperdown, NSW. SEPTEMBER 2015 australian healthcare & hospitals association