Download Keeping Abreast of Future Need: the Growing Demand for Breast

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
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
BREAST CANCER IS
THE MOST COMMONLY
DIAGNOSED CANCER
IN WOMEN
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
15
15
15
15
15
15
2,340
2,390
2,438
2,486
2,534
2,582
17,940
18,320
18,688
19,056
19,424
19,792
PER CENT OF EXISTING PATIENTS
REQUIRING FURTHER CARE
ONGOING PATIENTS
TOTAL PATIENTS PER YEAR
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
920
923
926
929
931
934
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
AVERAGE OOS PER PATIENT
OOS/FTE BCN/YEAR
REQUIRED BCN FTE
FTE GROWTH
BREAST CARE NURSE GAP
79
364
370
376
382
388
4.56
4.37
4.34
4.31
4.28
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
Since the creation of the McGrath Foundation ten years
for more Breast Care Nurses in Australia. This is not a
ago 105 McGrath Breast Care Nurses (MBCN) have
need that can be fulfilled by one charity, or by a single
been funded nationwide, supporting more than 36,000
governmental body. It is a need that requires collaboration,
families experiencing breast cancer. The cost of funding
and must be tackled with a sense of urgency as the
the existing 105 MBCNs each year is $13.3m.
numbers of those diagnosed with breast cancer requiring
The McGrath Foundation is focused on creating new
the services of a BCN continues to grow.
BCN positions and supporting more families through
Whilst there have been significant falls in the mortality rate
increased fundraising. However, to fund the current
of those with breast cancer – owing to earlier detection,
MBCN workforce plus the additional 109 nurses
and better treatment – there has not been a similar decline
needed by 2020, it is estimated to cost $27.1m per
in the number of women diagnosed. Combined with an
year, a 104 per cent increase. As demand rises, the
evolving model of care, due to increased needs and
McGrath Foundation cannot take on the challenge of
complexity of treatment, the role of the BCN is expanding,
meeting this growing, national need alone; we will need
incorporating survivorship needs and the needs of people
the support of Governments, corporations, businesses,
with secondary breast cancer, meaning that the current
and individual donors is needed to address the
supply does not meet the demand for BCNs.
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
20152016201720182019 2020
13
GLOSSARY OF TERMS
BCN:
Breast Care Nurse
FTE:
Full Time Equivalent
MBCN:
McGrath Breast Care Nurse
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
2003; 12:91-97.
3ibid.
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
9ibid.
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.
19ibid.
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