New global care standards to help those living with advanced cancer

In the past, advanced or metastatic cancers were rapidly fatal, however with new treatments people with these cancers can now survive for a long time, sometimes many years. They have unique and complex care needs but because they usually can’t be cured, and do not yet need palliative care, they can often be overlooked.

An international consortium, led by Associate Professor Nicolas Hart (lead author) from the University of Technology Sydney (UTS) and Professor Raymond Chan (senior author) from Flinders University, has published a set of clinical practice standards and recommendations aimed at providing optimal care for these individuals and their caregivers.

The initiative is backed by the Multinational Association for Supportive Care in Cancer (MASCC) and the American Society of Clinical Oncology (ASCO). It provides a critical resource to healthcare stakeholders to facilitate tailored and effective care across disciplines and settings.

Translated into more than 10 languages, the standards and practice recommendations are targeted at a wide array of audiences within cancer care, including healthcare professionals, administrators, governments, policymakers, and, most importantly, cancer survivors and their caregivers. 

“People living with advanced and metastatic cancer have limited treatment options, a typically poor prognosis, and high healthcare needs leading to a more intense and frequent use of healthcare services. However, they are typically under-served and under-resourced, and can feel their needs are neglected,” said Associate Professor Hart. 

“Cancer survivors, and their caregivers, can now consult a set of standards and recommendations to see what ‘quality survivorship care’ looks like, so they can self-advocate, and ask their healthcare provider for support that they may not have previously been aware existed, such as a survivorship care plan,” he said.

The MASCC-ASCO initiative introduces seven standards of quality survivorship care underpinned by 45 practice recommendations. Professor Chan said the imperative was to acknowledge and address the diverse needs of this growing population and fill a crucial gap in survivorship care.

“Despite the importance of high-quality care for all people affected by cancer, those with advanced or metastatic cancer may intentionally or inadvertently be denied quality care or may feel excluded. It is imperative that services recognise all people affected by cancer,” said Professor Chan.

“We emphasise the need for person-centred care, coordinated and integrated care, evidence-based and comprehensive care, evaluated and communicated care, accessible and equitable care, sustainable and resourced care, as well as research and data-driven care,” he said.

The standards were developed in partnership with those with lived experienced of advanced and metastatic cancer, including healthcare researcher Dr Andrea Smith, who has first-hand experience of the gaps in services for those living long-term with a metastatic breast cancer diagnosis.

“Adjusting to a diagnosis of advanced or metastatic cancer is challenging. Adjustment means dealing with prognostic uncertainty, the capricious disease trajectory, the unpredictable chronic versus acute nature of the disease, and the ever-present existential threat,” said Dr Smith. 

“Many people with advanced or metastatic cancer feel alienated and misunderstood by their oncologists, their families, and their communities because no one is quite sure how to navigate this place where cure is not an option.”

Melissa Chin, the Executive Director of MASCC, said the standards were developed for multinational implementation and they hoped to reach as many regions worldwide as possible, and advocate for improved survivorship care globally.

“It is recognised that various hospitals and health services across different regions will have different initial capacities to adopt and integrate many of these practice recommendations,” said Ms Chin.

“In the near term, the plan is to develop clinical resources to support the integration of these standards and recommendations, including clinician toolkits and translations. Future directions may include medical education, training, and cultural adaptations for various regions in the world.

“These standards are designed to address the unique needs of individuals with advanced or metastatic cancer and also to recognise and involve caregivers and family networks in supportive care considerations.”

The Practice Standards and Recommendations have been published in two prestigious journals: JCO Oncology Practice and Supportive Care in Cancer. Additional clinician toolkits and language translations are also available here.