How Can We Build a Sustainable Cancer Survivorship Care System?

Advances in cancer screening and treatments have led to improved survival rates across all cancer types, contributing to a growing population of survivors—referring to people diagnosed with cancer, through the rest of their lives.1 There are now almost 54 million people living 5 years beyond a cancer diagnosis.2 As cancer treatments increase in complexity and toxicity, many survivors live with impaired quality of life, debilitating symptoms, unmet needs, and inequitable access to care.3 These issues underscore the urgent need for effective, sustainable models of survivorship care. The current specialist-led, medically focused model of survivorship care is neither sustainable nor effective at meeting the needs of cancer survivors.4 In tackling complex problems, the most effective solutions are often the simplest—yet frequently overlooked. Whether due to overcomplication, proximity to the issue, or competing distractions, we can often miss what is right in front of us. To create sustainable cancer survivorship care systems, we must go back to the basics and maximize the role of primary care, nursing and allied health professionals, and patients and their support networks. These long-standing, readily available resources can be amplified through emerging technologies to meet today’s unprecedented demand for care and deliver equitable, effective, and sustainable survivorship care. Primary care has long been the cornerstone of strong health systems, offering accessible, coordinated care across the lifespan.5 The current specialist-led model of follow-up care for cancer survivors who have completed treatment retains people within the acute care system and does not capitalize on the role and expertise of primary care providers.6 Primary care providers are capable of delivering evidence-based, guideline-driven cancer care and are more likely to promote healthy lifestyle behaviors, address survivors’ unmet psychosocial needs, and manage comorbidities, compared to cancer specialists.7 Evidence demonstrates primary care–led and shared care–led models of follow-up survivorship care deliver comparable physical and psychosocial outcomes to specialist-led care, closer to home, and often at a lower cost to survivors and the healthcare system.8 Of note, nurses play a pivotal role in coordinating care between oncology and primary care settings,9 leading to research of nurse-enabled models of follow-up share-care.10 The 2005 Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition, highlighted the need for better integration between oncology teams and primary care.11 Yet, 2 decades later, primary care–based survivorship models remain underutilized.8 Nursing and allied health professionals play a vital role in meeting the holistic needs of cancer survivors during and after treatment,12 by leading or contributing to care coordination, symptom management, support of physical well-being, delivery of patient education, and enabling self-management.13 Despite their proven effectiveness, nursing and allied health professionals remain underutilized in managing the complex impacts of cancer on survivors’ quality of life.14 Allied health–led programs that effectively address side effects, improve physical function, and enhance quality of life of are not yet widely and equitably accessible to cancer survivors, despite their known benefits.15,16 As cancer increasingly becomes a chronic condition, empowering survivors with self-management skills is increasingly vital.17 Cancer nurses are well-equipped to deliver a range of survivorship cares across the care continuum, including (but not limited to) surveillance and management of physical and psychological effects, health promotion and disease prevention, decision-making support, care coordination, and evaluation of patient experience.18–20 However, nurses require dedicated education and training, supported by research, to effectively provide such comprehensive survivorship care.14,21 Emerging evidence indicates that nursing and allied health professionals may safely and effectively lead survivorship follow-up care, offering tailored advice, support, and interventions for treatment-related effects.12 It is vital that nursing and allied health professionals are supported to work to their full scope of practice to deliver sustainable and effective survivorship care in the coming decades.17 Finally, the importance of patients and their support networks cannot be underestimated within sustainable models of survivorship care. People affected by cancer and their families (positioned within their broader support networks) play a pivotal role in the management of cancer as a chronic illness,22 through self-management, health promotion, and collaboration with healthcare providers to achieve optimal outcomes. Yet, compared to other chronic illnesses, cancer lags in its provision of proactive self-management support in routine care, leaving survivors at risk of poor health outcomes and quality of life.22 Cancer care clinicians are calling for a revolution to capitalize on patient self-management in cancer care through (1) preparing patients to be actively involved in their care, (2) challenging healthcare culture so patients are genuine partners in care, (3) preparing the healthcare workforce to enable patient self-management, (4) greater focus on patient-reported outcome measures to support self-management, and (5) expanded reach and access to self-management support programs.22 A recently developed competency framework to support nurses to enable self-management in survivors provides a valuable first step.23 More work is desperately needed. With the growing number of survivors, patients and families must be empowered to manage both the medical and emotional consequences, and lifestyle and work changes, caused by cancer and treatments.22 Emerging technologies have the potential to improve the efficiency, effectiveness, and equity of survivorship care. Wearable devices, virtual reality, chatbots, robotics, digital pathology, mobile apps, and artificial intelligence–powered tools are just a few examples of technologies than can be used to improve patient experience and outcomes24—there are many more. We have only begun to understand the potential of emerging technologies in survivorship care. Benefits may include improved access to care, support of clinical decision-making, enhanced patient engagement, improved quality of life and symptom management, greater participation in clinical trials, support for caregivers, and reduced healthcare utilization.25–28 Emerging technologies will enhance and enable, not replace, the delivery of care between primary care providers, nurses and allied health professionals, and patients. The acute care system is under unsustainable pressure, and cancer survivors continue to experience suboptimal outcomes. Effective solutions are often closer than we realize—hidden in plain sight. We must fully harness the resources already at our fingertips. We call for actions to devise strategies at the local, national, and international levels to maximize the roles of primary care, nurses and allied health professionals, patients, and their care networks, supported by emerging technologies, to improve survivorship care. By doing so, we can improve the lives of millions across the globe. Elise Button, PhD, MHlthEcon, MAdPrac(Hons), BN, RNRaymond J. Chan, PhD, MAppSc(Research), BN, RN Caring Futures Institute College of Nursing and Health Services Flinders University Adelaide, Australia