Shared decision making is a key component of patient-centred and evidence-based healthcare. Its integration into routine care is of interest to healthcare providers, consumers and policymakers who want to improve the quality of healthcare. The process of shared decision making enables healthcare providers and a patient with a condition that has more than one available clinically appropriate management strategy, to make a joint health decision. The decision takes into account the best available evidence, in conjunction with the patient’s values and preferences and understanding of the benefits and harms of available options. There is unequivocal evidence that shared decision making improves the quality of healthcare decisions, reduces unwarranted variation in care, and improves patient outcomes. Despite these benefits, shared decision making has not been systematically adopted in clinical practice in Australia. Strategies exist that can help healthcare professionals who treat patients with breast cancer incorporate shared decision making into their practice. We review these strategies, including patient decision aids, patient navigators, decision coaches, and online risk calculators.
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.
Improvements in outcomes for women diagnosed with advanced breast cancer make it imperative to address their wellbeing and medium to long-term supportive care needs. This paper highlights the need for specialised interventions directed towards the amelioration of psychological and social distress for this patient cohort and their caregivers. Screening to identify the supportive care needs of patients should occur at critical time points across the treatment trajectory. While many people respond well to support services to facilitate adjustment to a cancer diagnosis and treatment, as needs become more complex there is a requirement for specific referral to tailored interventions that aim to optimise psychosocial wellbeing. Referral to appropriately skilled psycho-oncology professionals should be the ‘gold standard’ to help people with advanced disease deal with the existential issues that arise. The lack of availability of skilled clinicians is one of the main barriers to the provision of high level psycho-oncology services. Health professionals and service providers need to consider new technologies and modalities to improve the reach of supportive care interventions for patients who are unable to access traditional face-to-face services. A challenge for psycho-oncology professionals is to undertake research to make psycho-oncology services more accessible and meaningful to the most vulnerable populations.
Background: Sexual dysfunction is an extremely common event affecting the wellbeing of women with breast cancer. It includes physical and psychological factors that may occur during early treatment and extend into the years following diagnosis. Without appropriate recognition and management, quality of life may be significantly reduced to a point where treatment compliance is impacted.
Aim: To assist healthcare workers to identify and manage sexual dysfunction in patients with breast cancer.
Methods: This article reviews both physical and psychological aspects of sexual dysfunction, together with the potential impact that breast cancer treatments will have on sexuality; additionally strategies for management are described.
Conclusion: Strategies to improve the recognition of sexuality issues together with approaches to management that are acceptable for the patient while not increasing breast cancer recurrence risk are vital.
Around a quarter of breast cancer patients are premenopausal at diagnosis. As cancer treatment can increase premature menopause, fertility and pregnancy after breast cancer are important issues for many women. This review summarises the literature on fertility after breast cancer and strategies to help women achieve pregnancy – specifically, the risk of infertility, fertility measurement after cancer, the impact of future pregnancy on prognosis, birth outcome, contraception, the psychosocial impact of infertility and pregnancy and assisted reproduction after breast cancer. Pregnancy rates after breast cancer are low. Nonetheless, it is important that women are made aware of the potential impact on their fertility and given information regarding their options for fertility preservation before treatment and about their options after treatment to achieve a pregnancy. Decisions to conceive are challenging as women are weighing up their desire for children against fears of recurrence and potential inability to detect future cancers. Providing evidence-based information and psychosocial support to breast cancer survivors who wish to conceive is an important clinical issue in need of greater attention.
Chemotherapy-induced hair loss is a common and distressing side effect of some chemotherapy agents, and is ranked as one of the top three most distressing side effects by patients. Hair loss (alopecia) is more prominent on the scalp but affects the eyebrows, eyelashes, beard, axillary and pubic hair and typically begins within the first three weeks of starting chemotherapy. Patients report lower quality of life, high levels of distress, negative body image and feelings of loss of control associated with their alopecia. For most patients regrowth occurs after treatment completion but the colour and structure of hair can be altered, prolonging the negative impact on patient sense of wellbeing. The impact of chemotherapy-induced alopecia on patients is underestimated by many health professionals. Management is typically to camouflage the loss by wearing a wig, head scarf, or hat/turban. Scalp cooling with coolant based devices to reduce chemotherapy-induced alopecia has been available in Europe for more than a decade, but has only recently been introduced in Australia. Scalp cooling works by reducing local concentration of chemotherapy agents and decreasing metabolic uptake by hair follicle cells. Given the significance of hair loss to patients, further research to ameliorate this common side effect of chemotherapy treatment is urgently required.
Cognitive symptoms are commonly reported by cancer patients. Qualitative research has shown that up to 70% of cancer patients experience symptoms of varying magnitude. Several studies have demonstrated only a weak association between self-reported cognitive symptoms and objective cognitive impairment on formal neuropsychological testing. Conversely, cognitive symptoms have been consistently shown to be associated with other patient reported outcomes, including anxiety/depression, fatigue and quality of life. Cognitive symptoms can have a major impact on individual’s personal and professional lives. Initially, the terms ‘chemo brain’ or ‘chemo fog’ were used, as it was believed that cognitive changes were a direct result of chemotherapy treatment. It is now clear that the aetiology of cognitive change is more complex, with several studies showing presence of impairment in patients with a new cancer diagnosis, prior to commencement of systemic therapy. The exact aetiology of cognitive impairment is unknown, but it is likely multifactorial. There has been interest in the evaluation of pharmacological and cognitive training strategies for the management of cognitive impairment in cancer patients. Most recently, a large randomised study of a home-based, online cognitive rehabilitation program showed improvements in cognitive symptoms and patient reported outcomes. However, there remains no universally accepted treatment.
Anxiety and depression are the two most prevalent psychiatric presentations among women with breast cancer. If left untreated, anxiety and depression can have serious psychological, medical and health service utilisation consequences. These include reduced likelihood of accepting, tolerating and adhering to recommended treatments, and increased toxicities and severity of medical symptoms that, in turn, can increase healthcare costs and reduce quality of life. Risk factors for anxiety and depression in women with breast cancer include: a past history of anxiety or depressive disorder; younger age at diagnosis (<50 years); poor social support; burdensome somatic symptoms; currently undergoing active cancer treatment; specific drug treatments; and body image distress. Interventions for depression and anxiety in breast cancer have typically comprised a) pharmacological treatments, with citalopram, venlafaxine and mirtazapine being safe antidepressants to treat both anxiety and depression; and b) psychotherapy, with cognitive-behavioural therapy considered the current gold-standard treatment for primary breast cancer, and supportive-expressive approaches more appropriate to women with advanced disease. However, distress continues to be under-screened and under-treated. In order to increase the reach of our services, more tiered and systematic approaches to screening, and a stepped care approach to delivering treatments are required.
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.
More than 15,000 women are expected to be diagnosed with breast cancer in Australia in 2016. The shift towards delivering cancer care through ambulatory treatment centres means that partners, relatives, children, siblings and friends of women diagnosed with breast cancer are commonly required to provide much-needed care and support for these women post-treatment. The role of ‘carer’ can take many different forms and for some, it can be equivalent to a full-time job, with many carers reporting having more things to do than they can handle. Being a carer can be a positive experience, for example some husbands of breast cancer patients undergoing active treatment reported both interpersonal and intrapersonal benefits of caring, such as feeling closer to their partner and growing as a person. However, there is ample evidence that taking on the role of carer has significant impacts on carers’ physical and mental health and many carers feel ill-prepared for that role, especially if the care requires them to address complex medical needs while also supporting their loved one with the psychological challenges experienced following a cancer diagnosis. The inter-relationship between patients’ and carers’ wellbeing is well-documented, with evidence suggesting that carers’ physical and mental wellbeing may influence patient status. Hence, offering informal carers interventions that are structured, goal-oriented and time-limited is recommended to support them in their roles, and many argue that family carers should be considered a ‘co-user’, or ‘co-client’ of cancer services.