Redefining Survivorship – Better Patient Support Starts Here

The definition of cancer survivorship has evolved over time. Historically, survivorship was reserved to describe the period following the completion of active cancer treatment. Early definitions included the designation of “cancer survivors” for those who remained disease-free for 5 years. This definition excludes patients undergoing active treatment, those coping with residual disease, thus not accounting for the full spectrum of challenges cancer patients face.¹ Fortunately, the National Coalition for Cancer Survivorship (NCCS) has defined survivorship in a broader view. In 1986, the NCCS defined survivorship to start at the time of diagnosis and continue throughout the patient’s lifetime. This broader definition more accurately captures the unique challenges cancer patients face throughout their lifetime.¹

Despite being around for decades, this more inclusive definition is not always recognized and thus limits the proper support, resources, and advocacy needed for cancer patients.² The NCCS introduced this more comprehensive definition to acknowledge the impact of cancer on patients extending beyond the end of active treatment—including ongoing physical, psychosocial, and economic challenges. Similarly, cancer survivorship extends beyond just the patient. Cancer survivorship also includes the patient’s family, friends, and caregivers supporting these individuals in their own unique experiences surrounding cancer.³

Current debates in oncology continue around refining survivorship. Emerging efforts emphasize the extensive impact cancer has on a patient’s quality of life related to challenges in mental and physical health, psychosocial barriers, and economic hardship.⁴ This evolution of survivorship shows the necessity for a comprehensive and robust framework to address survivors at the distinct phases of their cancer care journeys.⁵ Through properly defining survivorship starting at the time of diagnosis, healthcare systems and programs can be tailored to meet the complex needs of cancer patients throughout their life.

Given the complexities of cancer survivorship, it is essential for healthcare professionals to use this term accurately. A precise and comprehensive understanding of survivorship is essential for improving patient care, as it enables better support and proper care for the patients throughout their cancer care journey.⁶ Proper usage also promotes healthcare systems to perfect resources, enhance current or implement new survivorship programs, and ensure proper budget to support such services.⁷ Similarly, correct application of the term is necessary for advocacy and policymaking efforts—through influencing funding, rights, and services for all survivorship phases.⁸ Ultimately, redefining survivorship enhances opportunities for improved access, broader coverage, and additional resources for cancer patients—all vital for their success throughout the cancer care journey.⁹

Survivorship Phases

Redefining survivorship is essential for improving patient care in oncology. A comprehensive understanding of survivorship encourages better support for patients, health system optimization of resources, and implementation of survivorship programs.² Incorrect use of this term can lead to underutilization of services and mismanagement of budgets intended for comprehensive programs.¹⁰ In addition, proper application of this term is necessary for advocacy and policymaking leading to proper funding, rights, and services for this patient population.⁷

To appropriately use the term cancer survivorship, it is vital to understand the complexity and inclusions there. Cancer survivorship includes 3 distinct phases: acute, extended, and permanent survival.¹¹ Each phase of survivorship focuses on addressing the unique but serious challenges that are associated with that period of the cancer care journey.

• Acute Survivorship: This phase begins at diagnosis and continues to the end of active treatment for the initial cancer diagnosis. The focus of this phase includes addressing immediate concerns that come with active treatment, including side effects, recovery from surgery, and developing comorbidities.¹¹ Support during this phase includes monitoring for complications from treatment and surgery, providing symptom relief, and helping patients prepare for and transition to the extended survivorship phase.
• Extended Survivorship: Starts after active treatment ends and lasts for several months. This phase involves managing late or long-term side effects, surveillance for recurrence, and addressing chronic illness developed during the acute phase.¹² A survivorship care plan (SCP), including suggested follow-up appointments and general health tips, should be provided during this phase.
• Permanent Survivorship: This phase begins several years after cancer diagnosis, after active treatment, and when the patient is still considered cancer-free.¹¹ The focus of this phase includes managing late and long-term side effects, addressing chronic health conditions related to or worsened by their cancer diagnosis, and improving overall quality of life. The support for this phase should include a holistic approach such as lifestyle changes, psychosocial support, and providing community resources.¹³

These 3 distinct phases aid in improving patient care and, therefore, patient outcomes. The distinct phases of survivorship can help guide healthcare professionals in predicting the challenges patients may be facing. Then, healthcare professionals can focus on assessing, addressing, and preventing the challenges and special needs of a patient’s unique situation, leading to improved overall quality of life.¹⁰

Managing Survivorship

Clinical Tools

As the definition of survivorship has evolved, so have the tools available to support patients throughout the distinct phases of survivorship. These tools include SCPs and telehealth technology. SCPs provide a summarized document of pertinent medical information unique to the patient’s diagnosis and treatment.¹⁴ The SCP encompasses surveillance schedules, preventive measures, and comprehensive follow-ups. This tool helps enable patients to be a key decision maker and promote plan adherence in their cancer care journey, ultimately leading to better patient outcomes.¹⁵

Electronic health records aid in the management of cancer survivorship by increasing the access and ability to send information between patients, providers, and other healthcare professionals.

The use of telehealth technology in cancer survivorship is possible in a variety of ways, including the use of electronic health records, telemedicine, and remote patient monitoring (RPM).¹⁶ Electronic health records aid in the management of cancer survivorship by increasing the access and ability to send information between patients, providers, and other healthcare professionals.¹⁷ Telemedicine appointments are used in survivorship to allow for better access for patients in rural communities as well as for reducing unnecessary travel for patients in urban communities.¹⁸ Lastly, RPM is used to provide real-time transmission of vital information about the patient’s health and well-being.¹⁹

Psychosocial Support

In addition, psychosocial, economic, and educational support is necessary throughout all phases of cancer survivorship. Psychosocial assessments can help healthcare professionals with emotional or psychological aspects of survivorship in which the patient needs added support.¹⁹ Patients may experience anxiety, depression, or stress related to their cancer diagnosis and a number of life changes that go with it.² Various tools can be encouraged and referred to, including counseling, support groups, and other mental health services. Ensuring psychosocial support resources are available for cancer patients is necessary as they navigate complex changes related to their cancer experience.²⁰

Patient Education

Patient education is an important part of all phases of cancer survivorship. Effective patient education empowers patients to take an active approach in the management of their side effects and medical decisions throughout the cancer care journey.²¹ Educational tools to support patient education include items such as workshops, self-management programs, and tailored education sessions with healthcare professionals. Research indicates that educated and empowered patients improve self-care activities, leading to better quality of life and patient outcomes overall.

Evidence-Based Practices and Guidelines

Current guidelines from ASCO and NCCN provide evidence-based recommendations for survivorship care. These guidelines emphasize the importance of comprehensive SCPs, regular follow-ups, and psychosocial support to meet the needs of survivors.^22,23 Evidence-based practices surrounding survivorship supportive services and programs show improved patient outcomes by tailoring care to survivors’ individual needs.²⁴ This research includes the key role oncology nurse navigators (ONNs) play in the success of survivorship programs. ONNs aid in enhanced patient outcomes through providing prompt interventions and reducing wait times between diagnosis and initial consultation by approximately 20.42 days. Studies also show that ONNs improve completion rates for cancer care services and improve patient satisfaction.²⁵ Therefore, incorporating nurse navigators is recommended when developing or refining survivorship services.

Despite the progress in cancer survivorship care, significant areas in need of improvement remain. The Cancer Moonshot Initiative launched by the White House aims to address these gaps in practice by expanding access to cancer screenings, understanding and preventing toxic and environmental exposure, preventing more cancers before they start, driving innovation and delivering the latest progress to patients and communities, and supporting patients and caregivers.²⁶ This initiative also seeks to improve global cancer challenges.⁵

ONNs are well positioned to support and advance these initiatives. Being in close contact with patients, providers, health system leaders, and policymakers, the ONN is equipped with firsthand knowledge of the challenges facing cancer patients.²⁷ ONNs also understand the financial pressures within the healthcare system and can advocate for improvement that can enhance patient care, reduce costs, and advance cancer care delivery.^8,28

For meaningful progress in survivorship, it is essential to set up a universally accepted definition of cancer survivorship. Effective advocacy for comprehensive survivorship programs can be built using this appropriate definition, thus allowing for appropriate integration of such programs into daily practice and lobbying for insurance coverage and government funding.^29,30 Additional research and refinement of survivorship guidelines is necessary to address the changing needs of the diverse patient populations. This additional evidence-based practice can ensure effectiveness of survivorship care practices.¹

Conclusion

Redefining cancer survivorship is essential for developing comprehensive programs that address the full spectrum of care from diagnosis through end of life. Historically, survivorship was defined as the absence of disease. However, modern views consider survivorship as the entire cancer experience. This broader definition helps with better resource allocations, support, and policymaking.^15,31

Oncology nurse navigation is vital to supporting the redefining of cancer survivorship. ONNs provide personalized support and continuous care. ONNs help bridge gaps in medical care, enhance communication, and improve survivorship care planning.^27,32 Lastly, ONNs assist patients in transition between the various phases of survivorship without unnecessary complications.²⁹

Improving survivorship care is necessary for overall advancement of cancer care at large. Changes in practice and policy are necessary for effective comprehensive survivorship programs. Improvements in insurance coverage and proper funding are necessary for the progression of this goal,³³ as well as additional research and evidence-based practice guidelines. Future research should be conducted focusing on improving care models, evaluating interventions, and addressing care disparities.²⁴ Through ongoing improvements based on such research, patients’ cancer journeys can be enhanced, resulting in better support and improved quality of life.⁴

References

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