The impact of a breast cancer diagnosis goes beyond the early diagnosis and treatment phases. While survival has improved significantly over the last decade, women report ongoing quality of life (survivorship) concerns as a result of their diagnosis and treatment. There are many models of supportive care available in Australia, including those provided by specialist breast care nurses, general practitioners, peer support groups and cancer support agencies and councils, and more recently those provided through virtual platforms. Most models of care in Australia recognise the need to provide supportive care throughout the treatment trajectory and beyond, yet there remains an inconsistent pattern in providing coordinated supportive care post completion of acute treatment. This review provides a brief synopsis of some of the models of supportive care available within and outside of Australia.
Breast cancer remains the most commonly diagnosed cancer in women in Australia. In 2015, 15,050 women were diagnosed and by the end of 2020 it is estimated this number will increase to more than 17,000.1 This equates to one in eight women diagnosed with breast cancer by the age of 85.2 Despite the increasing numbers diagnosed, survival from breast cancer in Australia is improving. This is partly due to the wide range of treatments available, particularly the personalised therapies that have become available in the last decade.3,4 Alongside increased survival, has been the recognition there is more to survivorship than not dying, and quality of life throughout the treatment trajectory and beyond are paramount. Cancer affects both the physical and emotional wellbeing of individuals and their families. It also represents significant costs to the community in terms of the provision of healthcare, infrastructure, absence from work, and in some cases premature mortality,3,5 all significant factors when considering delivery of care to women during and following treatment. Supportive care is central to cancer care as it attempts to address the broad spectrum of issues that go beyond immediate treatment and encompass physical, social, psychological and spiritual domains for patients, their family and carers.6
Furthermore, the necessity of using a patient-centred, coordinated and multi-dimensional approach in caring for women and their families following a diagnosis of breast cancer has long been recognised by physicians, nurses, allied health teams and the women themselves.5-7 Certainly within many hospital settings there have been serious inroads to providing coordinated care for women following diagnosis and during treatment. This is often through a multi-disciplinary and in many sites an interdisciplinary approach, inclusive not only of the surgical and medical treatment teams but also of breast care nurses, physiotherapy, expert peer support, and counsellors or psychologists.
However, these contemporary models of care still focus on immediate diagnostic treatment and supportive needs with follow up frequently centred on detection of recurrent disease and are usually clinically or hospital-based.7,8 This is in direct contrast to other healthcare settings such as cardiovascular care or stroke care, where rehabilitation and prevention of recurrence are integral to the completion of an episode in acute care.9 The Institute of Medicine recommended recognising cancer survivorship as a separate phase of cancer care that warrants ongoing attention from all experts in the oncology arena.10-12
Research has also demonstrated that returning for specified appointments post-treatment can cause anxiety related to revisiting the cancer experience and because of the potential of the specialist finding a recurrence.8 This is despite it being widely acknowledged that the majority of recurrences are found by women themselves.8,13 Studies in the UK also found women tended to use their appointments for reassurance but were lacking sufficient information and support relating to day to day living with what for many had become a chronic disease as a result of treatment.8,14 They felt attendance at follow up clinics did not always acknowledge or provide strategies for living well after cancer.13 They provided a prescription for drugs but no ‘prescription’ for good health.
Many women would concur their supportive needs go beyond this type of follow up. When intense treatment and interaction with health professionals within the hospital is complete, they often feel isolated and alone, fearful of disease recurrence while struggling to manage side effects and societal attitudes that assume everything is now behind them.
The challenge is to provide cost-effective, well-coordinated, and holistic models of care that meet a variety of needs in a consistent manner throughout Australia. From this perspective, it certainly is not ‘one size fits all’ and clearly the implementation of assessment tools at commencement and completion of acute treatment may help identify appropriate and individualised supportive care needs.15
The majority of women diagnosed with breast cancer will survive their disease but will live with the numerous and varied side effects of ongoing treatment and the emotional consequences of their diagnosis. Clearly they can feel a loss of control and confidence and lack the resources and knowledge to empower themselves, especially in areas relating to quality of life, health and wellbeing for the future.16,17
A successful model helping to overcome this and in use in some regions of Australia is that of shared care with GPs. Emery suggests shared care is neither ‘hospital’ care nor ‘primary health’ care but a merging or blending of the two, a well-researched and practiced concept in the provision of obstetric care.8 Emery also notes systematic reviews of such alternative models have shown no significant difference in patient-related clinical, psychosocial, physical or emotional outcomes. It is also generally accepted after any cancer diagnosis and treatment there is a greater susceptibility to other chronic diseases as well as the risk of other cancers or recurrence.8,18,19 GPs have a broad knowledge of the management of multiple health issues and may be better placed to manage them than in the acute oncological clinic setting. GPs are also more likely to be able provide family-centred care which acknowledges the woman’s diagnosis is not in isolation of other aspects of her life.20,21 However, GPs may have limited time for what can be lengthy conversations around practical and informational management of treatment side effects.
A model of supportive care provision that is autonomous yet complementary has evolved from specialist nursing. In both Europe and Australia, the role of the breast care nurse is widely recognised as the link between the woman and other interdisciplinary team members both within and outside the hospital environment.22 Unfortunately in Australia, while this role has been integrated into many tertiary hospitals and in the community primarily through the McGrath Foundation, and is an expectation of women with breast cancer, there are still inconsistencies across roles, competencies and training.23 Some organisations profess to employ breast care nurses, yet they have not actually undertaken a specialised training breast care nurse course despite the existence of such courses through Australian Universities. Compounding this, qualifications are not necessarily a mandatory pre-requisite to practice as a breast care nurse and despite attempts for the role to be accredited with regular competency approval, this still has not occurred. Lack of coordinated training in this arena and role ambiguity can lead to inconsistency in provision of supportive care,23,24 inappropriate patient assessment and lack of understanding of the complex nature of breast cancer treatment and side effects and therefore support for the women coping with these.
Supporting these comments, it is widely reported that where specialist breast care nurses are appropriately trained, there are many positive benefits of this role for both patients and other health professionals.22-24 In Australia essential to this role are the core domains of breast care nursing, supportive care, collaborative care, coordinated care, information provision and clinical leadership.25 Each of those domains speak for themselves in describing the role of the specialist breast care nurse as being the link between the woman with her family and the treating team and all community resources. The expectation is the specialist breast care nurse is able to identify physical, informational, emotional, social, psychosocial, psychosexual and spiritual needs and provide flexible and evidence-based interventions around them in the context of collaboration and communication with a broader interdisciplinary framework.26
In the UK, a supportive model of care called ‘Moving Forward’ was successfully trialled with specialist breast care nurses providing routine follow up for low to moderate risk patients rather than a specialist or shared care by the GP.13 In effect this model replaced routine follow up appointments with an education program and in doing so provided a more cost effective use of resources while continuing to address patient anxiety and provide support and reassurance around many aspects of after cancer treatment concerns. These include menopause issues, sexuality concerns, fear of recurrence and lymphedema to name but a few. Importantly this model also provided facilitated peer support through connection with other women undertaking the follow up program. In Victoria, a similar nurse-led follow up program was developed in conjunction with the multidisciplinary team and GPs, it focused on the delivery of a comprehensive screening and survivorship program for women with early or low risk cancer, that was coordinated with specialist or GP medical follow up and was successful in addressing many of the concerns previously discussed relating to the scope of follow up after breast cancer.27
The value and success of the specialist breast care nurse role from the perspective of healthcare providers, community organisations and the women themselves has led to further development to include supportive care for women with metastatic disease. The supportive care needs of these women are notably different from those diagnosed with early breast cancer.28 This group of women are no longer dealing with disease that is curable and for most, brings forth numerous different concerns around family management, ongoing treatment, potential job loss and significantly at this point in time living with a life threatening disease. The literature supports anecdotal information suggesting these women do not receive the same level of support as those diagnosed with early disease. In particular they are often not provided access to a specialist breast care nurse where one is normally available.28,29 This usually occurs where clinical pathways do not define identification and referral of this group of women.28,29 In Victoria, a model of care is emerging for training specialist breast care nurses at an advanced practice level to manage the diverse and unique needs of women diagnosed with metastatic disease. While similar to the model supporting women with early breast cancer it is a distinctly separate role and continues throughout the treatment trajectory and beyond. Importantly as women are living longer with metastatic disease, there is a clear focus on health promotion and wellness rather than simply disease management.28,29
Another equally valuable and often understated model of care is peer support. Peer support has many iterations in the context of cancer care and can be as simple as non-facilitated support where one woman connects with another in the hospital or clinic setting, or more complex support through trained peer support offering facilitated, coordinated and planned face-to-face visits or telephone contact. A number of national groups such as Breast Cancer Network, Dragons Abreast Australia and state Cancer Councils or local organisations such the Wesley Hospital Choices Cancer Care Centre, Chris O’Brien Life House, BreaCan, or the Olivia Newton John Cancer Centre provide this sort of supportive care model. Significantly expert peer support enhances both medical models of care and patient outcomes.30 Indeed, sharing the ‘lived experience’ in an appropriate and expert manner has been shown to decrease patient anxiety and sense of isolation and contributes to a better quality of life.30,31 Additionally, those trained to provide expert peer support have much to offer in provision of educational programs particularly around strategies to enhance cancer survivorship, and managing day-to-day activities during and following treatment.30 They bring with them a diversity of experience, information and perspective and can be excellent patient advocates when provided with appropriate training. They are well placed to support health professionals across both hospital and community domains to provide best possible and comprehensive care to patients.30
As previously mentioned, breast cancer survivors have an increased risk for other health issues either as a direct result of the stage and grade of disease, or because of the treatment side effects which can engender or exacerbate pre-existing co-morbidities such as heart failure. However, at completion of treatment return to the workforce limits ability to attend conventional face-to-face support and survivorship groups. Women from rural and regional areas may also experience geographical isolation and inability to find face-to-face services locally.32 Emerging models of care supplement face-to-face consultations through virtual platforms. These flexible models are able to be offered in an evidenced-based, cost-effective manner, reducing not only costs to an overburdened healthcare system through no need for clinic space and set up but also the cost of time and traveling for the patient.33
Research focusing on models of care delivered through Internet, email, Skype, Smartphones and apps, suggest use of this technology to provide information and support can increase psychological and physical wellbeing in cancer patients.33,34 Immediate access to information through these mediums have led to greater opportunities for knowledge acquisition, social support and improved health-related quality of life both dependently and independently of health professionals.35,36 There are many good examples of evidence-based supportive care websites for women with breast cancer; a short list will be provided at the end of this article. However despite being demonstrated positively in the chronic disease setting,33,36,37 there are a paucity of interventions available through the internet that actually empower cancer survivors specifically in the area of physical activity, an important contributor to quality of life.33,34 An example of a model of supportive care, addressing physical activity, psychosocial, supportive and educational needs of patients after breast cancer through a virtual platform has been developed.38 The Women’s Wellness after Cancer Program and the Younger Women’s Wellness after Cancer Program offer a 12 week e-health enabled lifestyle intervention that aims to reduce the risk of other chronic illnesses while addressing day to day concerns for women after cancer treatment and is underpinned by social cognitive theory.38,39 All women who register with the program receive health education materials including a hard copy book, an electronic interactive e-book/journal (iBook) and access to an interactive website with an online ‘community’. The electronic solutions are integrated through a centralised cloud (internet-based) database to share common information and back up the data. In addition, users can use the online video conference for personal consultations with a trained and experienced cancer care nurse. The step-wise approach focuses on goal setting around exercise, healthy eating and management of fatigue, sleep concerns, menopausal sexuality issues and cancer prevention and screening. The emphasis on self-efficacy enables women to empower themselves and take back control of their health and trials underway have shown promising results.
In conclusion, a brief overview of some supportive models of care for women with breast cancer has been discussed. This list is not exhaustive and it is important to acknowledge there are numerous models of supportive care and very many other healthcare partners involved in provision of supportive care to women after cancer. These people include social workers, psychologists, counsellors, complementary therapists, physiotherapists, occupational therapists and nurses from other disciplines, providing a range of choices and options for women. What is probably significant is the need for equitable, affordable and coordinated supportive care, and in Australia the most effective model is likely to be one using the trained specialist breast care nurse whose focus is entirely on the full trajectory of breast cancer. The specialist breast care nurse can then be the active link between all the supportive models of care to provide a seamless transition from hospital models of care to the community to obtain the best outcome for patients and their families, while recognising it isn’t ‘one size fits all.’
Australian supportive care web sites for women with breast cancer
Breast Cancer Network of Australia (BCNA) – bcna.org.au
BreaCan Support – breacan.org.au
Cancer Australia – canceraustralia.gov.au
Cancer Council Australia – cancer.org.au
Choices Cancer Support Centre – wesley.com.au/services/choices-cancer-support-centre
Chris O’Brien Lifehouse – mylifehouse.org.au
Dragon’s Abreast Australia – dragonsabreast.com.au
Jean Hailes for Women’s Health – jeanhailes.org.au/health-a-z/menopause
McGrath Foundation – mcgrathfoundation.com.au
National Breast Cancer Foundation (NBCF) – nbcf.org.au
Olivia Newton-John Cancer and Wellness Centre – austin.org.au