Supportive care for women with breast cancer living in rural Australia

Authors:

Details:

The Alan Coates Cancer Centre, Dubbo Base Hospital, Dubbo, New South Wales, Australia.


Abstract

Breast cancer is the most common cancer diagnosis among women in Australia. The incidence in rural/remote areas is lower compared to metropolitan areas however management in non-metropolitan regions is complicated by reduced access to support services, screening and diagnostic tools, as well as cultural factors and the tyranny of distance. Despite improvements in technology, reducing the disparity of care between rural and metropolitan patients, further investment in known solutions and supportive care research is required to assist with managing the individual psychosocial needs of women as they go through their breast cancer journey, in order to improve rural patients’ poorer outcomes.


Breast cancer in the rural setting

In Australia there are more than 15,000 women diagnosed with breast cancer annually. Approximately 30% of the Australian population, or five million people live in rural or remote areas, with 20% of these five million people living in rural or remote communities with less than 5000 residents.1 It is predicted that there will be over 200,000 women in Australia living with breast cancer by 2017.2 The incidence of breast cancer decreases with increasing remoteness from 114 per 100,000 in major cities to 94 per 100,000 in very remote areas. This may in part be due to uptake of screening mammography in very remote areas being 47% and as low as 36% in Aboriginal and Torres Strait Islander women.

Breast cancer mortality rates are higher in inner and outer regional areas (25 per 100,000) compared to major cities (23 per 100,000) despite lower incidence. Five year relative survival was also lower at 84% versus 89.5% for rural/very remote and major cities respectively.3 The biggest determinants of survival in the rural setting are neighbourhood socioeconomic status, being employed in blue collar occupations, having advanced disease and indigenous status.4

One per cent of women in Australia diagnosed with breast cancer identify as indigenous. While incidence is lower than in non-indigenous Australians, indigenous women are more likely to present with advanced disease and less likely to receive surgical treatment compared to non-aboriginal women. Risk of death from breast cancer is 39% higher in Aboriginal women compared to non- aboriginal women.5 The inequality in survival between indigenous and non-indigenous women with breast cancer has closed over the last 20 years, however this disadvantage must continue to be addressed.6

Studies have demonstrated the difficulties in providing optimal breast cancer management in non-metropolitan settings. Delays in commencement of adjuvant chemotherapy for early breast cancer are associated with increased mortality. In one large rural centre, the median time from primary surgery to chemotherapy was 53 days compared to 33 days in an inner metropolitan centre. Patients studied in another large rural centre with a fly-in medical oncologist were more likely to experience delays in receiving adjuvant chemotherapy than their city peers.7-8

Primary treatment support

Australia has clinical practice guidelines for the management of breast cancer however geography, access to specialist services and socioeconomic levels are significant factors that impact patient treatment decisions in the rural setting. The majority of breast cancer patient’s first specialist contact will be with the surgeon. A cross sectional survey of 70 women in rural Victoria reported that in 60% of cases it was the surgeon who confirmed the cancer diagnosis with the patient. The general practitioner told 22% of patients and in 13% of cases it was the radiologist. Surgeons will refer most women to breast care nurses but only 2% of women in this cohort were referred to a psychologist.9

Supportive care needs are highest around the time of diagnosis for women in the rural setting.10 In general, 20% of women will suffer from anxiety after they are told that they have breast cancer and 40% of women will report depression.11 Oncology counsellors are available at some rural centres’ but resources are limited (see table 1 – the Dubbo experience). Counselling services can be accessed through GP management plans, but access is not equitable across the country.12 There are also breast cancer support groups that may be available to some rural patients. For patients who are more rurally isolated, the Cancer Council has a one-on-one telephone support line with a professional counsellor. Further, websites hosted by Cancer Council Australia, Breast Cancer Network Australia, McGrath Foundation and Cancer Australia provide information on what breast cancer is, treatment options and what to expect, members of the treating team, how to have discussions with family, how to access support services, complementary medicine, and general health and wellbeing information.

Box 1: The Dubbo Experience: Summary of support services available at the Alan Coates Cancer Centre

The Alan Coates Cancer Centre (ACCC) is located in Dubbo, NSW. Dubbo sits on the Macquarie River, a town of 42,000 situated 400km north west of Sydney. It is the referral centre for 130,000 people, from Mudgee in the south east to the Queensland border. Hungerford, the town in the catchment furthest away from ACCC, is 590km away by road, the first 200km on unsealed roads. There is an eight chair chemotherapy suite in Dubbo, as well as a satellite four chair chemotherapy unit in Mudgee. Treatments are supervised by one resident medical oncologist and one resident haematologist, with support from visiting colleagues from Sydney one day per fortnight. Face-to-face consultations are provided at Mudgee (120km east of ACCC), Walgett (270km north) and Cobar (300km north west), with video consultations to most of the 23 hospitals in the catchment. The nearest linear accelerator is 160km to the south east of Dubbo, in Orange.

Support

Services

Psychological/
Emotional

Breast care nurses
– Survivorship programs
– Secondary telephone counselling
Oncology counsellor
Counselling services (through GP management plan)
Cancer Council peer support programme/telephone counselling
Breast cancer support groups (one monthly held in the day, second one every second month in the evening)
Genetic counselling service
Telemedicine

Physical

ENCORE program
Wig library
Look Good Feel Better programme
Lymphoedema specialist
Physiotherapy
Aqua therapy programme

Financial/Social

Pink Angels – provide practical support i.e. meals, cleaning, yard maintenance, fuel vouchers
Canassist – accommodation expenses
Social welfare officer
Isolated Patients Travel and Accommodation Assistance Scheme (A New South Wales government initiative for patients who live more than 100km from the nearest treating specialist)
Angel Flight

Indigenous Health

Aboriginal Health Worker
Indigenous cancer support group

Complementary Medicine

Reflexology (off site)
Remedial massage (off site)
Acupuncture (off site)

Other

BreastScreen Services
Community Dietitian

An Australian qualitative study has demonstrated that non-metropolitan cancer patients identify travel as the biggest disadvantage associated with treatment, leading to social isolation, financial distress and family disruption.13 At least half of women with breast cancer living in regional or remote areas will require financial assistance for travel with 13% having difficulty organising or claiming back these expenses.14 Women will make decisions based on reduced need to travel, a woman with early breast cancer is more likely to undergo mastectomy and less likely to have breast conserving surgery if she lives more than two hours from a radiation facility or comes from a socioeconomically disadvantaged area.15 

Bridging the gap

Breast care nurses were introduced in the 1990s to improve continuity of care and provide increased psychosocial support to women with breast cancer. The role of the breast care nurse is not clearly defined and may vary depending on geographic location. These roles include coordination of patient care and provision of information and support to cater to the individual needs of the patient.16

Difficulty in navigating the complex system of cancer care and misunderstanding about communication and information needs are commonly cited as reasons for lack of engagement of Aboriginal Australians in screening, surveillance and treatment for all cancers.17 Additionally, suspicion of dominant social structures such as healthcare from a common perception of marginalisation discourages some Aboriginal Australians to enter the system. Aboriginal Health Workers can help with personalising, accessing and explaining the system in a culturally appropriate manner.18

In Australia, Queensland Health has been active in adopting the telehealth model to help bridge the divide of lack of specialist medical oncology services in rural and remote communities. The majority of patients preferred the initial consultation to be done in person but attitudes towards subsequent telemedicine consultations resulted in positive feedback from the patients and healthcare workers.19 Telehealth also benefits clinicians by reducing travel time, enhanced education, peer review and better support for isolated practitioners.20

The Patient Remote Intervention and Management System is being trialed in haematology patients. The aim of the intervention is to improve patient outcomes using telemedicine with real time assessment of treatment side effects.21 In rural Western Australia, The Improving Rural Cancer Outcomes Trial is a general practice level factorial cluster-randomised controlled trial of a complex intervention to reduce time to diagnosis in rural patients with cancer.22

The road to recovery

The needs and supports of women with breast cancer change as they progress through their treatment journey. Following the completion of primary treatment, many women report apprehension at the sudden change in frequency of appointments with their specialist. This sense of isolation is compounded by limited availability of specialists and support programs in rural setting.23 Common concerns include physical sequelae of treatment, intimacy issues, fear of recurrence and the stigma of death associated with breast cancer. Despite these concerns, women identify personal growth as a positive result of the treatment.24

A breast cancer diagnosis may have a lasting impact for years, particularly on sexual well-being and as many as half of women continue to feel unattractive. Ongoing symptoms include tiredness, vaginal dryness, and hot flushes.25 The Look Good Feel Better program teaches cancer patients how to manage the appearance related side effects caused by cancer treatment. The ENCORE program is an eight week course for women who have undergone surgery for breast cancer. The aim is to improve fitness and quality of life and reduce the treatment related side effects as well as improve body image and self-esteem.

Lymphoedema will affect 20% women even four years after primary treatment.26 Patients living in the country were 37% more likely to develop lymphoedema than city patients.27 Lymphoedema therapists provide a key management service, but are only available in some rural areas, with limited capacity.

Breast cancer patients develop a strong and trusting relationship with their cancer specialists and are reluctant to transfer their care to a general practitioner-led model. This ongoing specialist contact assists with the transition to the surveillance pathway. Due to the lack of specialist services, a shared care arrangement between specialists and general practitioners may be more feasible.28 In the absence of specialist led follow-up, women would prefer to have routine surveillance conducted by a breast physician or breast care nurse as opposed to a regular GP.29 In terms of screening, despite poorer access to mammography services, women in rural areas had similar screening mammography rates as their metropolitan counterparts. Women in rural areas were less likely to have a clinical breast exam but more like to conduct breast self-examination.29

Summary

The management of breast cancer patients in the rural setting remains challenging due to the heterogeneous nature of the disease, geography and patients’ own needs. A one-size fits all model will likely fail in this setting and therefore care of women should be individualised to the patient and support services based on geography. While there has been progress in bridging the divide between rural and non-rural access to healthcare, there is still room to improve equity of access to medical services for rural patients through investment in innovative rural-based supportive care research, and increasing funding to rural cancer centres to increase access to proven medical, nursing and allied health led interventions.

References

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