Policy Priorities

Impact

All healthcare services that deliver cancer care should have the ability to recognise and respond to individuals experiencing psychological distress. The use of validated screening tools that measure patient-reported outcome measures (PROMs) assists healthcare professionals in identifying people at high risk of psychological distress and enables early intervention to prevent further deterioration and improve physical and mental health outcomes.¹ Screening can also help to identify prior or existing mental health issues and factors that could increase the risks of psychological distress (or that may mitigate distress), such as psychosocial factors, and ensure interventions are targeted to the needs of the individual. Distress screening should be conducted regularly to identify new issues early and monitor symptoms of persistent issues of distress, as these can change throughout the cancer care continuum.

While the recommendations outlined in “Clinical Pathway for the Screening, Assessment and Management of Anxiety and Depression in Adult Cancer Patients” were published in 2017, changes in cancer care services to reflect these have been slow. To improve equitable access to regular psychological distress screening in cancer care, recommendations for the use of validated tools and minimum timepoints throughout the care continuum should be embedded in all Optimal Care Pathways.²

Evidence

Unaddressed levels of distress can lead to a significant symptom burden, characterised by physical and psychological symptoms, impacting quality of life and potentially causing suffering.³ The importance of regular psychological distress screening using validated, reliable and objective measures is recognised in clinical practice guidelines.² Despite this, around 20% of people with cancer in Australia are never screened for psychological distress during their cancer care.⁴ People with cancer are unlikely to self-report psychological distress, and healthcare professionals may experience difficulty in identifying whether people are experiencing distress without a screening tool.⁵ Utilising a screening tool allows healthcare professionals to open discussions with individuals (and/or their carers and family) about any concerns they may have, detect psychological distress, arrange follow-up discussions of concerns, and instigate referral to mental health services appropriate to the individual's needs.⁶ Psychological screening should be implemented systematically and must be culturally appropriate.^7-9

Few studies have evaluated the implementation and sustainability of using distress screening in routine cancer care.⁵ Although it is recognised that education of healthcare professionals and provision of a clear pathway that outlines how to integrate regular psychological screening, follow-up, and referral can support implementation into clinical practice.^{2, 7} Psychological distress screening is typically completed as a semi-structured interview based on standardised diagnostic criteria, which can help identify any potential causes (e.g., pre-existing mental health conditions or substance use disorders) and the severity of relevant symptoms.² Existing Australian guidelines led by the PoCoG recommend the Edmonton Symptom Assessment System (ESAS) or Distress Thermometer (DT) with a problem checklist for use as an initial brief screening tool.² This is supported by other reviews, which have found the DT to be the most commonly used screening tool attributed to its ‘simplicity and brevity’.^{5, 10} The DT may be implemented in many healthcare settings with evidence for its use by clinicians, specialist oncology nurses, psychologists and by telephone-based health services.¹¹

Impact

Supporting people’s mental health is a critical aspect of comprehensive cancer care. An individual's experience of psychological or psychosocial distress may change throughout their cancer, impacted by key phases such as diagnosis, awaiting treatment, changes in or completion of treatment, discharge from hospital, treatment failure, recurrence or progression, survivorship or end-of-life. The implementation of a stepped-care model enables healthcare professionals to match interventions to the intensity and nature of the distress experienced by the individual, thereby supporting their mental health (Figure 2 – see Introduction).¹² This trauma-informed, evidence-based approach enables the delivery of person-centred care that respects the individual's context and values. Key to this approach is effective communication between healthcare professionals and the individual to identify and triage signs of psychological distress accurately. Low-intensity interventions can be delivered in a cancer care setting, including monitoring psychosocial distress and identifying and addressing barriers to accessing mental health support. This approach provides healthcare professionals with guidance on when to refer to interventions based on different levels of psychological distress and the role of specialist mental health care services.¹³

This stepped-care approach should be embedded in all Optimal Care Pathways, along with signposting to appropriate interventions specific to the needs of people affected by cancer. Interventions could include the provision of information and resources about self-management of psychological distress, nurse-led and peer-to-peer support services, and referral to psychosocial (social worker or counsellor) and mental health services (psycho-oncologist or psychiatrist). Specific culturally safe and appropriate recommendations are required to guide the provision of mental health care for priority populations and referrals to appropriate support services.

Evidence

Access to Interventions

Psychological interventions can aid in reducing psychological distress and are cost-effective when implemented routinely.^{3, 14-16} Examples include cognitive behavioural therapy-based and nurse-led telephone-based interventions and educational programs.¹⁷ Referral and assistance to access evidence-based mental health care services and support should be an embedded part of routine cancer care, including individualised support that takes into account the person’s determinants of health.¹⁸

Models of Care

With the growing number of people diagnosed with cancer and workforce limitations already impacting mental health service provision in Australia, it is unlikely that traditional individualised face-to-face interventions for all are a feasible option for supporting the mental health care needs of all people affected by cancer.^{19, 20} When coupled with a triage system to assess need, stepped-care models match the intensity of intervention with the identified need of the individual, ‘stepping-up’ the intensity of the intervention as need increases.^{2, 21, 22} Evidence has demonstrated that triage into stepped-care can effectively be conducted face-to-face by healthcare professionals in cancer care services, through nurse-led telephone interventions, and web-based entry systems.^21-24 In a stepped-care model, the healthcare professional providing the intervention for each tier should be determined by the individual’s level of need, thereby creating personalised care.³ All stepped care models should be delivered with appropriate follow-up care, including monitoring and options for further support, ensuring that as people’s needs change, so too does the support provided.²⁵ Ideally, a multi-disciplinary approach should be adopted to mental health in cancer care, bringing together oncologists, psychologists, psychiatrists, and social workers to provide integrated, patient-centred psychosocial support.²⁶

Shared care models, involving GPs and nurse-enabled care, deliver a safe and more sustainable option than specialist-led care.²⁷ Patient acceptability of shared care, whereby the GP provides referrals to psychological support, was high due to shorter waiting times and convenience.²³ This is particularly important for those who have completed cancer treatment.²⁸ Many people affected by cancer contact their GP initially to discuss psychological distress, making GP-led referrals a feasible model of care.²⁸ Other models of care in the provision of psychological care to people affected by cancer have been investigated in the adolescent and young adult population, with non-psychologist support emerging in popularity.²⁹ Nurse-led distress screening of cancer survivors with well-structured referral pathways to community-based services and continued monitoring is feasible and acceptable to help reduce ongoing symptom distress.³⁰

Peer-to-peer support

Peer-to-peer support can offer informational, emotional and psychosocial aspects, delivered by cancer survivors based on their own experiences.³¹ This can be a key component of supporting the psychosocial needs of people affected by cancer by offering them access to the unique perspectives of other people with lived experience.³² Studies have shown this format can help improve psychological wellbeing and resilience capacity, reduce depression and/or anxiety or fear of recurrence.³¹ Peer support can be delivered effectively in one-on-one or group settings, face-to-face or remotely, led by either trained professionals or cancer survivors with or without formal supervision and training in cancer support or group facilitation. Embedding peer-to-peer support within stepped-care models offers an accessible way to share information and advice, build community and connect with people facing similar challenges for emotional support.^{31, 33}

Impact

Public, private and community health providers must work together to deliver a comprehensive range of mental health services for people with cancer, who typically interact with multiple service providers across healthcare sectors. People affected by cancer who experience psychological distress should have access to psycho-oncology services without facing undue delays or financial burdens. In Australia, access to psycho-oncology services depends on the availability within cancer and palliative care services or the ability of the individual to pay out-of-pocket to access private mental health care services. In the current environment where mental health care services are offered by private and public hospitals, government and non-government organisations, and private businesses, it makes it difficult to compare the availability and accessibility of services or understand how they address the needs of people affected by cancer.

To date, national mental health workforce strategies have not specifically examined the psycho-oncology workforce and whether it is adequate to meet the needs of people affected by cancer. Despite work undertaken as part of various national mental health care and workforce strategies, there is a limited understanding of the supply and demand of services that are accessible and available for people affected by cancer in Australia. There is an urgent need to assess the capacity and resourcing of the mental health care workforce to address the needs of people affected by cancer and ensure a sustainable model of care. This should include modelling the cost-benefit of embedding psycho-oncology services into cancer care services and recommended models of care to support access across Australia.

Evidence

There is currently limited publicly available data describing the psycho-oncological workforce, and there are apparent disparities in private and public systems, although the extent of the workforce is unclear.³⁴ Clear role delineation and accreditation processes may improve reporting on the psycho-oncology workforce.^{34, 35}

The provision of psychological support and interventions throughout the cancer continuum can help prevent and reduce the experience of mental ill health.^{36, 37} Support should be timely and accessible to all people with cancer, acknowledging that there is no ‘one size fits all’ solution to providing psychological support for people with cancer, given the heterogeneity of the population.^{17, 18} Post-treatment cancer survivors may also continue to experience psychosocial issues and fear of cancer recurrence, yet psychosocial services are often prioritised for those actively undergoing treatment.³⁸ Access to appropriate psychological support is limited,¹⁴ whether because the supports do not exist, or the appropriate referral pathways to access them do not exist.³⁹ Most health services have limited access to resources that would enable the provision of psycho-oncological services for all people with cancer.¹⁴ Barriers include a lack of providers, limited integration of services, prioritisation of physical health over mental health, stigma and inadequate training.^{5, 14, 34, 40, 41}

Aboriginal and Torres Strait Islander peoples face additional barriers to access due to experiences of racism and a resulting mistrust of Westernised treatments.⁴² Cancer care services must be culturally safe and appropriate and consider the specific needs of Aboriginal and Torres Strait Islander communities.^43,44 This should include palliative and end-of-life care services that respect the rights of people to have their cultures respected. There is a need for culturally sensitive psychological support and interventions for Indigenous people affected by cancer to ensure their optimal management and care.⁴⁴ There is also a need for community-based Aboriginal and Torres Strait Islander health workers to be trained in supporting the psychosocial needs of the community. These barriers highlight the need for new models of care and an increased focus on bolstering the psycho-oncological workforce.^{29, 45}

Psycho-oncology services are provided free of charge in some larger public hospitals, sometimes through general hospital liaison services or teams or personnel specific to the Oncology Department.³⁴ Teams are comprised of social workers, psychologists and psychiatrists. Psychiatrists form an important part of psycho-oncology care teams, although the ability for people to access these services is extremely limited.⁴⁶ Dedicated psychiatrists within oncology units are rare and only available in some large public hospitals, with patients in rural and private hospitals often referred to external services, facing additional financial burdens.³⁴ Therefore, people living in rural and remote areas experience compounding issues of geographic and financial inequities in accessing both mental health and cancer care services in Australia.⁴⁷ Improving rural access to appropriately skilled health professionals who provide oncology-specific assessment and intervention is required.⁴⁸

Impact

There are significant gaps in our understanding of the experiences of psychological distress, mental health support, and outcomes of people affected by cancer. This is due to a lack of standardised data collection and reporting within the healthcare system of psychological distress, mental health service utilisation and mental health of people affected by cancer. A national approach is required to support data linkage and sharing across healthcare and mental health systems that can inform policy, planning, commissioning, system management, evaluation and performance reporting.⁴⁹ This should include recommendations on the ethical considerations of linking health and mental health datasets, along with privacy and confidentiality considerations. This data could inform the decision-making of policymakers, clinicians and service providers to improve people’s choices, experiences and outcomes and inform improvements in service delivery and effectiveness.

A nationally standardised data dictionary for psychological distress that is aligned across health and mental health care data systems would ensure alignment in the collection and reporting. This should include PROMs of psychological distress and mental health of people affected by cancer that are practice, service, or system specific. Consistent data categorisation and collection will enable the linkage of clinical datasets and reporting on the experiences of psychological distress and monitoring of PROMs related to mental health outcomes of people affected by cancer.

Evidence

Lack of Research Evidence

There is a lack of evidence on how the stage or type of cancer impacts the experience of psychological distress in adult populations. It is also important to track how distress changes and impacts outcomes among people with metastatic, advanced disease and/or co-morbidities. Some studies have found that younger age at diagnosis is commonly associated with higher rates of anxiety, depression and distress,⁵⁰ although this effect may dissipate over time, with psychological distress improving with time since diagnosis for younger adults.⁵¹ Other studies in paediatric cancer populations have found no association between age and psychological distress.⁵² There is a distinct lack of research about culturally specific psychological distress that can occur during cancer, therefore potentially leading to under-detection in Aboriginal and Torres Strait Islander peoples and other marginalised communities.⁸ Further highlighting the nuances of this topic, cancer survivors residing in rural areas have been found to have worse mental health outcomes than their metropolitan counterparts, although cancer survivors in metropolitan areas experience worse outcomes in social and emotional domains.⁵³ This could be due to people residing in rural areas having additional unmet needs related to service access compared to people residing in metropolitan areas, although the exact causes remain unclear.⁵³

Data Issues

Current methods of analysing the number of people affected by cancer who experience mental health or psychological distress are limited due to small samples and large-scale data linkage projects. Currently, data linkage projects are only able to capture participants who have a diagnosed mental health condition or who are using formal treatments that may indicate a mental health condition.⁵⁴ This leads to incomplete and underestimated data, as not all people who experience psychological distress will be diagnosed or access formal treatment.^{6, 55}

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