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.
Major improvements in medical treatment of advanced breast cancer have resulted in improved survival, but with the potential for long-term psychosocial morbidity, characterised by persistent and elevated emotional distress. It has been estimated that around 7% of breast cancer diagnoses are advanced or metastatic.1 The five year survival rate for women with advanced breast cancer was approximately 40% in 2012.2 While the five year survival rate is relatively high, it is often associated with significant burden of disease and associated emotional distress,3 centering around uncertainty about the future and the impact of the illness on close family members.4 There are high supportive care needs in this patient cohort, as well as for their carers and family.5 A systematic review by Fiszer and colleagues of the supportive care needs of women with breast cancer found that predictors of higher level of needs included women with advanced disease stage, greater symptom burden, shorter time since diagnosis, higher levels of distress and younger age.4 Supportive care is defined as incorporating physical, psychological, social, spiritual and informational domains. However for the purposes of this review, the focus will be on psychological and social domains.
A number of guidelines exist to inform health care professionals about the supportive care needs of people with cancer; including the United Kingdom NICE guidelines,6 and from the United States the National Comprehensive Cancer Network,7 Institute of Medicine,8 and the American Cancer Society / American Society for Clinical Oncology Breast Cancer Survivorship Care Guideline.9 Australian guidelines for providing psychosocial care for people with cancer have been published by Cancer Australia, including the Clinical practice guidelines for the psychosocial care of adults with cancer10 and the Clinical guidelines for responding to suffering in adults with cancer.11 Recently, guidelines and clinical pathways have been published for the management of anxiety and depression in adults with cancer both nationally and internationally.12,13 In addition to these guidelines which have been developed for use by health professionals, there are many resources developed for consumer use through government and non-government organisations.
Screening for distress
Given the high supportive care needs among this population, there is an imperative for treating health professionals to identify those at risk for persistent psychosocial distress and refer to the relevant member of the psycho-oncology team. Healthcare professionals need to monitor and reassess patients at multiple time points across the disease trajectory and make appropriate referrals, as supportive care needs often change over time. Referral, delivery of interventions and review of psychosocial outcomes need to be conducted in a timely manner to optimise psychosocial wellbeing.14
While there is general agreement among health professionals that all people with cancer should be offered basic resources to enhance their information and supportive care needs, there is no national consensus around the screening of cancer patients to determine their needs and to guide referral for those whose needs are higher. The process of undertaking screening is variable with divergent views about who should screen, at what time points and the screening tool. The Distress Thermometer is the most widely used instrument for screening distress in breast cancer patients.15 Other measures commonly used to assess distress in breast cancer patients include the Hospital Anxiety and Depression Scale,16 and the Edmonton Symptom Assessment Scale.17
Even if screening is deemed appropriate and is conducted routinely, further questions arise as to the availability of suitably qualified and trained health professionals to respond in a timely manner to patients whose screening results indicate their need for referral to specialised psycho-oncology services. This problem is exacerbated for people living in regional, rural and remote locations, where the presence of dedicated psycho-oncology health professionals who can provide face-to-face interventions is varied at best, and likely to be missing or constricted in range of specialties available.
Optimal care pathways have been developed (for example, a report endorsed by Cancer Australia and Cancer Council Victoria18) to direct health care professionals towards timely and appropriate referrals for people with cancers of particular types (for example breast, ovarian, colorectal, melanoma). However, they are dependent upon the availability of service providers with specialist knowledge of psycho-oncology and often those specialised in psycho-oncology provide services across all disease sites. The manner and strategies for meeting the supportive care needs of people, particularly those in sub-groups at high risk of severe and ongoing distress, are left largely unaddressed. If there is no access to onsite psycho-oncology services at cancer treatment centres, other options for supportive care may be found through self-help or community-based support groups, psychologists, mental health specialists and other counsellors in private practice, through non-government organisations or breast cancer specific support organisations such as the Breast Cancer Network Australia. Cancer specialists and patients need to be mindful that the level of service provision in external agencies is highly variable. There is usually no mechanism for quality assessment or control; nor any minimum requirements for delivering such a service. The term counsellor is not protected.
Fitch’s model of supportive care recognises that most patients require screening for general support and information;19 however as the psychosocial needs become more complex, specific referral and intervention is required to ensure tailored supportive care is implemented. In response to this, increasingly psycho-oncology clinicians have developed specialised interventions to consider the unique needs of this population. Managing psychological morbidity in people with advanced breast cancer is often based on psychological therapies such as cognitive and behavioural therapies, mindfulness, acceptance and commitment therapy and supportive expressive therapy. In the current literature it is difficult to compare the relative effectiveness of therapies due to the variability in quality of the trials conducted.20
People with advanced cancers are confronted with many existential challenges including those around death, loss, meaning and spirituality. People with advanced cancer are at increased risk of developing death anxiety with one study of 60 people with metastatic cancers reporting around 32% of participants having moderate levels of death anxiety, with the concern causing the greatest distress being the impact of their death on their loved ones.21 Low self-esteem, increasing age, having younger children and experiencing physical symptoms such as changes in physical appearance and pain were associated with death anxiety.21 In recognition of these existential challenges, specific therapies have been developed for people with advanced cancer. These include dignity therapy, meaning and purpose therapy, supportive expressive group therapy and meaning-centred therapy.
Pharmacotherapies play an important role in the management of psychological morbidity in people with cancer especially for those with more severe psychiatric disorders and also for those who are unable or unwilling to engage in psychological therapies.22 Increasingly, there has been recognition of the role of pharmacotherapies in managing not only psychiatric conditions but also in assisting with physical symptoms such as nausea, hot flushes, disturbances in sleep and pain.22
Similarly, the role of psychological interventions is being recognised in managing symptoms associated with the burden of disease such as managing cachexia, pain, breathlessness, fatigue and insomnia. Therapies such as cognitive behavioural therapy have also been used for the management of specific concerns such as pain,23 fatigue,24 and sleep disturbances25 in a cancer cohort. Increasingly the role of lifestyle interventions, such as exercise programs, in symptom management in advanced cancer are being explored.26
Furthermore, with improved technologies, there have been increasing alternatives to the traditional face-to-face method of delivery of therapies. Technologies such as telephone-based therapies, online interventions and computer-mediated videoconferencing technologies are being explored as possible mechanisms for psychotherapeutic interventions. Advantages of having a range of modalities for delivering therapy include improved accessibility for people unable to attend appointments due to illness or distance; these technologies may also be more acceptable to people who are reluctant to engage in traditional face-to-face therapy.
Further areas of investigation are warranted for some of the more complex cohort of the advanced breast cancer population. Many people diagnosed with advanced breast cancer will be concerned about issues of advance care planning and end of life care at the time it becomes clear to them that their cancer is progressive and incurable. In most instances this is a conversation which is best initiated by health care professionals. Most people have not thought about their choices and management options in end-stage disease,27 and few people engage with their families in discussions about how to instigate strategies to maintain comfort and dignity at end of life. Issues around a will, ongoing care of dependent children, cognitive capacity for decision-making, funeral wishes and accessing financial and statutory entitlements, may become fraught for both patients and their caregivers in the context of the emotional distress inherent in facing end of life.
Facilitating these discussions in a timely manner can contribute immeasurably to the therapeutic acceptance of imminent death; and can serve as a cornerstone of anticipatory grief therapy for family members. Guidelines have been developed to assist health care professionals in delivering appropriate interventions at end of life; for example, The Australian Centre for Health Research (ACHR) 2016 report on Conversation – Creating Choice in End of Life Care28 and Australian Commission on Safety and Quality in Health Care National Consensus Statement (2015): Essential elements for safe high quality end of life care.29 In addition Advance Care Planning Australia provides comprehensive information and resources for health professionals and consumers on all aspects of end of life planning. Given the challenging nature of these conversations, continued support and input by health care professionals can enhance progress towards satisfactory completion of this process.
There are a number of sub-populations of people with advanced breast cancer who are known to be at high risk for elevated distress. These include people of Aboriginal and Torres Strait Islander descent, people who are culturally and linguistically diverse, men, younger women, people with pre-existing mental illness, people who identify as lesbian, gay, bisexual, transgender, queer or intersex, people with familial cancers, older people and women with pregnancy-associated breast cancer. While most of these groups are referenced in general guidelines, additional specific resources have been developed for people who are Aboriginal and Torres Strait Islander,30 older people31 and people who are culturally and linguistically diverse.32
Healthcare professionals and administrators need to be aware of the health disparities that exist between people diagnosed with advanced breast cancer and should ensure delivery of supportive care services to these vulnerable populations.9 The psycho-oncology literature increasingly reinforces the efficacy of psychological interventions to ameliorate distress in people with advanced cancer. However, the participants in most of the reported studies are largely women of younger age, usually English-speaking, with high educational levels and socio-economic status. Research evidence is lacking for people who fall within the groups whose supportive care needs are likely to be higher; including CALD, ATSI, regional, rural and remote, people with low health literacy and those with a history of mental health concerns.
With an increasing number of people living with advanced breast cancer there is a concomitant demand for supportive care services that is not matched by the limited specialised resources available to address psychosocial morbidity, especially for those at highest risk of significant morbidity. A requirement for patient-centred care is now well integrated into the health system across all levels of service delivery. Ideally, cancer patients should have access to a networked approach to healthcare, encompassing collaborative partnerships that transition seamlessly from primary care to community-based settings and through to tertiary cancer centres.
While the ‘gold standard’ comprehensive cancer centre service would embed a dedicated, specialised psycho-oncology team within it, this is rarely achieved in Australian settings especially in non-metropolitan areas. There is thus an impetus to consider alternate models of service delivery. Such models may include telehealth, e-interventions and cancer-specific training for generalist psychosocial service providers. Irrespective of the psycho-oncology service delivered, it is imperative that the focus of therapeutic interventions is on the needs of all people with advanced breast cancer and their families. Most current guidelines and evidence-based interventions have been developed for people whose socio-demographic characteristics place them in the category of those who often have better access to resources and psychosocial support than those who have been identified at highest risk of persistent psychosocial distress. The emphasis for the future needs to be on developing supportive care resources for those whose social and health inequalities are most apparent.