Developing Personalized Survivorship Care Pathways in the United States: Existing Resources and Remaining Challenges

INTRODUCTION

In 2019, there were 16.8 million cancer survivors in the United States. By 2030, this number is expected to grow to 22 million.¹ An increasing proportion of survivors, currently 64%, are 65 years old or older.² Survivors are diagnosed with an average of 5 comorbidities over their lifetime.^2,3 An unsustainable number of cancer survivors seek routine care from oncology providers that is often unnecessary, costly, and burdensome.^4,5 At the same time, the United States is facing health care provider shortages in professional disciplines needed to care for these survivors. Cancer survivors have substantial health care needs beyond diagnosis and treatment requiring surveillance and care for the late and long-term effects of cancer treatment and comorbidities^3,6,7 as well as financial, informational, emotional, and social needs.^6–8 However, these needs vary in the level of frequency, intensity, and complexity of care and management required; therefore, a one-size-fits-all strategy is not appropriate for health systems already stretched thin by the global pandemic of coronavirus disease 2019 (COVID-19; severe acute respiratory syndrome coronavirus 2) and an increasingly unsustainable demand for cancer care.⁹

To address similar challenges, the United Kingdom and Australia have begun to pursue a personalized approach to survivorship care.^10,11 Personalized survivorship care in these countries has involved directing survivors to care pathways after the completion of acute cancer treatment based on their overall care needs (ie, those already present) and risk of developing needs later in survivorship (hereafter, these overall care needs and risks will be referred to as complexity).^12,13 The goal is for survivors to be categorized into 1 of 3 groups—low, medium, or high complexity—and directed to care accordingly.^11,12 Although these countries have made significant progress toward implementing personalized survivorship care, it has not been without challenges.¹⁴ Prior work by Alfano et al¹² has detailed how the United States may learn from implementation progress in other countries.

In the absence of structured protocols for survivorship care in the United States,^15,16 oncologists often continue to be patients’ main (and sometimes only) source of care, even many years after treatment has been completed, to the detriment of both newly diagnosed cancer patients, who are met with provider shortages and treatment delays, and lower complexity survivors, who receive unnecessary, costly, and sometimes inappropriate care that may not adequately address holistic health needs. Although ongoing clinical interactions between survivors and oncologists may be psychologically beneficial to both parties in many cases, it is no longer feasible for them to take the lead on managing survivors’ diverse needs.

A personalized approach to survivorship care in the United States has the potential to improve access to lower cost, higher quality survivorship care.¹⁷ Additionally, by more rationally distributing limited oncology resources on the basis of patient needs and risk, this approach could facilitate the more equitable delivery of care to patients by prioritizing those most in need.⁹ For example, accounting for multilevel social determinants of health, such as food insecurity and inadequate housing, which are associated with worse cancer outcomes,¹⁸ in the assessment of patient complexity has the potential to optimize equitable resource allocation in survivorship care.

Personalizing survivorship care requires stratifying survivors, who are defined for the purposes of this work as individuals with no evidence of disease after treatment. Stratification is based on a comprehensive assessment of baseline needs (including functional, social, and economic needs) and the predicted risk of recurrences and long-term and late effects. It then requires developing care pathways to tailor care to holistic patient needs. We are currently developing a clinical prediction algorithm to ultimately be used as a tool, alongside patient-provider conversations, for stratifying breast cancer survivors. To extend this work and ensure that this tool can be used in practice, this commentary examines how personalized care pathways could be developed and implemented in US health systems in the context of existing resources. Although prior discussions of US survivorship care have either retrospectively evaluated progress toward creating a more structured survivorship care system¹⁹ or focused on forward-looking research priority setting,^9,20 this commentary is novel in its focus on tangible implementation in practice alongside the development of a tool to guide stratification. For context, we first describe the needs of low-, medium-, and high-complexity survivors and the recommended personalized care pathways for each group. We then highlight existing infrastructure and resources in the United States that may be leveraged in developing personalized care pathways within health systems, identify challenges to adapting these resources to each care pathway, and offer recommendations for assessing needs and delivering personalized care in practice (Fig. 1).

Figure 1.

Next steps toward implementing personalized survivorship pathways in the United States. This figure shows the existing resources for and associated challenges with implementing each of 3 personalized survivorship care pathways in the United States. The depiction of personalized care pathways is based on prior figures of personalized survivorship pathways by Nekhlyudov et al⁴⁵ and Vardy et al.⁷⁷ EBI indicates evidence-based intervention; PCP, primary care provider; SCP, survivorship care plan.

LOW-COMPLEXITY SURVIVORS

Needs and Recommended Care Pathway

Low-complexity cancer survivors include those who have a low risk of recurrence and mortality upon treatment completion and are unlikely to experience severe long-term or late effects from treatment. Low-complexity cancer survivors additionally have limited immediate care needs that can be addressed by a primary care provider (PCP). These survivors may be best suited for a self-management survivorship care pathway if the oncologists and the survivors agree that the survivors have the support, health literacy, and engagement required to self-manage their care. The self-management pathway includes follow-up and surveillance through annual PCP visits (rather than oncologist visits), the identification of resources for ongoing physical and psychological symptom management, the integration of lifestyle behaviors to manage illness in everyday life, and education about signs and symptoms of recurrence and when to return to the oncologist.^21,22 Although self-management strategies are important for survivors in all pathways, they are particularly central to care for lower complexity survivors in the absence of routine contact with oncologists. Another key aspect of the self-management pathway is the ability of the patient, at any point, to return to a more intensive pathway in the case of signs of recurrence or patient concern.^10–12

Existing Resources and Challenges

Existing self-management programs for other chronic diseases, such as diabetes and depression, may be leveraged in the development of a self-management cancer survivorship care pathway.²³ Successful self-management interventions have been shown to reduce health care costs and utilization while also improving patient quality of life.^24,25 A review of primary care self-management interventions found that the most effective programs incorporated multiple components and were tailored to patient-specific and disease-specific needs.²⁶ Essential components included a patient/provider exchange of information and resources; enumeration of explicit health care goals; independent symptom monitoring; and tailored feedback regarding self-efficacy, problem solving, and decision making.²⁶ Successful self-management strategies require a high level of patient engagement with information and resources required to manage health needs.²⁷

Because cancer survivors may differ from other chronic disease patient populations, the successful application of existing self-management resources to low-complexity survivors will depend on adapting existing programs to meet the needs of survivors, many of whom also suffer from other chronic conditions.^3,26 Although many other chronic diseases are consistently managed in a primary care setting, cancer survivors must adjust to shifting their care away from an oncology specialist while also adapting to self-managing their survivorship needs. This will require providing more indepth education on long-term and late effects as well, as risk for new cancers, to both survivors and PCPs. Additionally, knowledge surrounding the risk of recurrence and new cancers will be important to ensuring that survivors feel confident about self-managing their survivorship care.^28,29 As we describe in detail below, rigorous methods for adapting existing self-management resources will help to ensure their relevance and effectiveness for cancer survivors.

The existing supply of PCPs in the United States will play a critical role in facilitating the successful implementation of a self-management care model. Because self-management reduces the oncologist’s burden by transitioning care to survivors and PCPs, this may simultaneously place further burden on PCPs, who are already in short supply, particularly in nonmetropolitan areas.³⁰ This transition also requires trust in PCPs from both oncologists relinquishing care and survivors receiving care.³¹ Surveys of patient preferences in both the United States and the United Kingdom have shown that cancer survivors often prefer that oncologists direct aspects of their follow-up care that could otherwise be handled by a PCP.^32,33 Furthermore, a comparison of barriers to survivorship care reported by PCPs and medical oncologists found that PCPs were more likely to report feelings of inadequate training and malpractice concerns, whereas medical oncologists were more likely to report uncertainty surrounding preventive care responsibilities.³⁴

Concern has also been expressed about increasing oncologist burnout as a result of removing “success stories” from their routine care^35,36 as well as a loss of revenue from ongoing follow-up visits. A successful shift to self-management for low-complexity survivors will require substantial cultural shifts in how and by whom survivorship care is managed. Systematically integrating PCP consultation throughout the course of cancer care may improve the transition following treatment completion by developing a foundational relationship between the PCP and the survivor.^31,37,38 Additionally, there may be ways for oncologists to keep in touch with low-complexity patients for the psychological well-being of both patients and providers without managing their care and thus contributing to barriers to care for new patients.

Successful personalized care pathways will require protocols to route low-complexity survivors to more comprehensive care in the case of abnormal screening results, severe late effects of treatment, or general patient concerns/preferences. Remote surveillance of survivors in the self-management pathway will require information technology infrastructure and telehealth technology to facilitate communication between PCPs, oncologists, and survivors.^20,39 Applying telehealth to the self-management pathway, however, may exacerbate inequities based on survivors’ access to broadband, familiarity with technology, or comfort with remotely located providers.⁴⁰ Furthermore, care for survivors who receive follow-up care from PCPs outside their oncology provider’s health system may be hampered by poor communications related to limited interoperability of electronic health record systems.⁴¹ Despite these challenges, the United States has seen rapid innovation in health information technology and telehealth platforms over the past decade,^41,42 particularly since the COVID-19 pandemic began,^43,44 and this must be leveraged to successfully facilitate remote surveillance and communication.

MEDIUM-COMPLEXITY SURVIVORS

Needs and Recommended Care Pathway

Medium-complexity survivors may experience a range of needs (eg, late effects of treatment such as cardiotoxicities or preexisting conditions such as diabetes) or a heightened risk of recurrence requiring closer monitoring.⁴⁵ These survivors are well suited to receive shared care by a limited number of clinicians, such as an oncologist and a PCP. Although a patient with a high recurrence risk may benefit from care shared between a PCP and an oncologist, a patient with more diverse needs related to other comorbidities may benefit from care from an alternative specialist.^45–47 Shared care involves closer follow-up than the self-management pathway allows but does not include the level of intensity offered by complex care management.

Existing Resources and Challenges

Care pathways for moderately complex survivors in the United States may be informed by existing innovations in care coordination such as the Pathways Community HUB model.^48,49 By relying on community care coordinators such as nurses and community health workers or navigators, this model connects patients to resources across health and social service sectors while maintaining centralized communication.⁵⁰ A randomized trial is currently underway to evaluate a multicomponent program in which volunteer peer educators coordinate the care of cancer survivors after an ostomy through a telehealth-enabled support group framework.^51,52 Care coordinators, navigators, or peer support specialists would be well situated to guide the communication between clinicians sharing care while also monitoring patient needs.

Additionally, shared-care models may benefit from effective implementation of survivorship care plans (SCPs), which encompass a written treatment summary and a proactive plan for the division of survivorship care responsibilities.^45,47 Although SCPs should be included in all 3 pathways, they must be a central component of shared care because of the need to clearly delineate roles between the limited number of clinicians involved in each patient’s care, who may not be colocated or used to coordinating care.⁴⁶ Despite their potential to facilitate communication and coordination of care for moderately complex survivors, evidence of SCPs’ effectiveness remains mixed, with a recent meta-analysis finding that SCPs do not improve survivors’ patient-reported outcomes.⁵³ Barriers to SCPs’ implementation (eg, insufficient time, resources, and personnel and a lack of reimbursement) may contribute to the lack of demonstrated benefits of SCPs.^54,55 Although there is currently no reimbursement mechanism for the completion of SCPs, the American Society for Clinical Oncology has been actively working on legislation to this end.⁵⁶

HIGH-COMPLEXITY SURVIVORS

Needs and Recommended Care Pathway

High-complexity survivors include those at high risk of recurrence or new cancers as well as those with complex needs related to underlying conditions or severe long-term or late effects of complex cancer treatment.⁴⁵ In a personalized survivorship care model, high-complexity survivors should receive complex care management by a multidisciplinary team (MDT) of providers. An MDT care management approach, which is more intensive than shared care in terms of the number and types of providers included, maximizes patient care while maintaining a coordinated approach to manage late and long-term effects of cancer and treatment such as cardiotoxicities, which are best managed by nononcology specialists.⁴⁷ Critical aspects of an MDT approach include identifying patient needs and matching them to specialty care and services accordingly.^45,47 MDT care management may be a particularly promising way to address underlying social drivers of health among survivors through the inclusion of social workers, who serve as important links to social services and community resources, as a part of health care delivery teams.⁵⁷

Existing Resources and Challenges

MDT cancer survivorship programs have emerged at high-volume, often academic cancer centers across the United States.^47,58 In the most resource-intensive versions, care teams are composed of providers experienced in providing care to survivors who consult with a range of specialists, health system administrators, psychologists, and social workers.⁴⁷ This approach has been used in pediatric long-term follow-up programs, which typically target a small number of survivors with a specific range of needs,^47,58 and among bone marrow transplant survivors.⁵⁹ These comprehensive, coordinated care models involve routine screening for late effects, referrals to specialists, detailed education provided to survivors and their caregivers, and a clinic specifically designed to coordinate survivorship care.⁵⁸ Not unlike pediatric and bone marrow transplant survivors, other high-complexity survivors may substantially benefit from such a comprehensive approach. As personalized survivorship care models are implemented throughout the United States, we must consider how to scale up this approach to serve larger numbers of survivors with diverse needs. Existing multidisciplinary programs are largely centered in academic medical centers, where a full range of specialists is readily available. Extending such a model to include high-complexity survivors living in more remote areas may require the integration of telehealth components or other innovations to meet the needs of these individuals.

In recent years, MDTs have increasingly been used for patients with other complex care needs. Patient-centered medical homes, which are designed to coordinate a range of medical, social, and mental health needs, are one such example of a multidisciplinary, coordinated approach.⁶⁰ Primary barriers to the success of these models identified in the literature include the inflexibility of fee-for-service payment models in reimbursing and incentivizing coordination efforts, logistical difficulties in the absence of shared electronic health records, and the limited time of physicians (particularly those in smaller practices with less support staff ) for coordination.^47,60 Prior analyses examining the potential of adapting patient-centered medical homes to cancer survivorship in the primary care setting have identified additional survivorship-specific barriers, including the lack of recognition of cancer survivorship as a distinct category in primary care, which has led to the absence of actionable care protocols.^61,62 Relatedly, oncology medical homes, designed for patients with cancer undergoing active treatment,^63,64 may be extended to survivorship for high-complexity survivors.⁶² Building connections between existing oncology and patient-centered medical homes will help to facilitate the transition of survivors from oncology to primary care settings.

NEXT STEPS

We have described the care needs of survivors on each of 3 personalized survivorship care pathways and have identified existing infrastructure, resources, and challenges. Paired with our initial clinical prediction algorithm for stratifying cancer survivors, this article serves as a starting point for transitioning to personalized survivorship care in the United States. As we move forward, we must consider the following next steps: formally cataloging available resources, adapting existing resources to a national survivorship care model context, matching resources to patient needs/risk within each pathway, and preparing for the evaluation of a personalized survivorship care model.

Existing resources and interventions that may be useful in the development of US personalized care pathways are currently disjointed and unstructured. Concerted efforts should be made to catalog existing resources and interventions. A comprehensive repository of survivorship care interventions has the potential to limit duplication of effort and identify optimal interventions. In part, this need is being addressed by ClinicalTrials. gov. Beginning in 2017, the National Institutes of Health expanded its definition of clinical trials to include care delivery interventions, and this can potentially serve as one source of information about survivorship care interventions. However, ClinicalTrials.gov likely excludes interventions developed before 2017 and outside the United States. Information at ClinicalTrials.gov may be augmented with similar repositories outside the United States (eg, http://www.anzctr.org.au/) and with outlets for information regarding interventions whose development and testing have not been funded by the National Institutes of Health (eg, manuscript protocols).

Leveraging existing resources will require the adaptation of off-the-shelf interventions to address the unique needs of survivorship care while maintaining demonstrated effectiveness. Idiosyncratic approaches to adapting interventions for personalized survivorship care could compromise interventions’ effectiveness and diminish their potential contribution. As we develop personalized survivorship care pathways and leverage existing resources and infrastructure, it is imperative that we use rigorous methods for adaptation that modify interventions to promote their implementation in survivorship care while preserving their effectiveness in achieving desired outcomes.^65,66

To maintain a patient-centered approach in developing personalized survivorship care pathways, we must prioritize assessing, and delivering services to address, patient risks and needs. We are currently developing a clinical prediction algorithm to predict the risks of death, recurrence, and severe late effects among breast cancer survivors. A detailed description of these methods and next steps can be found elsewhere.⁶⁷ As for needs assessment, patient-reported outcome measures (PROMs) could be leveraged as an important tool in this effort.⁹ Practitioners can use PROMs to assess survivor needs to assist in categorizing survivors into pathways as well as tailoring services to patient needs within each pathway. Several PROMs to identify unmet supportive care needs have been validated in cancer survivors.^68,69 However, in many cases, systems for connecting survivors with services to address needs reported in PROMs do not exist. Consequently, the Needs Assessment Service Bridge (NASB) has been recently developed and used to fill this gap; specifically, the NASB is used to refine PROMs for implementation in practice, develop systems for connecting survivors with services to address the needs that they identify in PROMs, and create services that do not exist to address patient needs.^70,71 NASB’s effectiveness has not been rigorously tested to date; however, it represents the only systematic approach to mapping refined patient-reported needs assessment onto services of which we are aware. Thus, efforts to promote stratified survivorship care pathways may be improved with funding to support NASB prototype testing and adaptation.

Lastly, we must assess processes and outcomes of this approach to survivorship care by using endpoints identified in existing frameworks, such as Nekhlyudov et al’s cancer survivorship care quality framework.¹⁷ We must also assess the implementation of personalized survivorship care pathways, which will require multilevel implementation determinant frameworks, such as the Consolidated Framework for Implementation Research and the Theoretical Domains Framework,⁷² and implementation outcomes frameworks, such as Proctor et al’s conceptual model of implementation research.⁷³

DISCUSSION

As we proceed with rigorously cataloging and adapting existing interventions and resources in the development of personalized survivorship care pathways, US efforts will benefit from collaboration with experts currently implementing this model in other countries, such as the United Kingdom and Australia, as well as countries implementing other delivery models (eg, nurse-led or rehabilitation-focused).^74,75 Developing an international survivorship working group could facilitate knowledge sharing between countries.

In transitioning to a personalized survivorship care model, a cultural change will be required to shift survivorship care responsibilities out of oncology clinics or to shared-care and MDT models. This will demand trust between oncologists, PCPs, and survivors. One important mechanism to facilitate this trust is ensuring that providers in the primary care setting, including nurses, have the education and training necessary to care for cancer survivors.⁴⁵ Bolstering educational resources, including medical and graduate school curricula and continuing medical education programs, will ensure that PCPs have a sufficient understanding of long-term and late effects.^45,76 It also must be acknowledged that ongoing communication, in some form, between oncologists and survivors who are doing well is critically important for the mental well-being of oncology care teams.^35,36 Awareness of these considerations as we prepare for implementation is a critical first step to directing targeted and perhaps localized efforts to enable this transition.

As we move toward implementing personalized survivorship care pathways in the United States, we must consider both the resources available that may be leveraged and the potential challenges that we may face. As we consider adaptations of existing resources to personalized survivorship pathways, implementing pilot programs will be critical to evaluating feasibility and effectiveness while building a knowledge base of effective strategies to be implemented by cancer programs across the country. Pilot studies may initially focus on a single health system to assess the feasibility of infrastructural changes required to implement personalized care pathways. If this is done systematically with insight from countries that have already begun implementing personalized survivorship care, we can facilitate the equitable distribution of limited oncology resources to survivors most in need while improving quality and reducing overall costs.