Continued Challenges to the Adoption and Implementation of Survivorship Care Plans

BACKGROUND

The population of American cancer survivors will exceed 26 million by 2040.^1,2 Maintaining the health of these survivors requires the delivery of necessary preventive and supportive care. Such care relies on communication and coordination among specialists, primary care providers, survivors, and cosurvivors.^3,4 The survivorship care planning work system⁵ can be tremendously complex with multiple individuals relying on survivor health records (whether electronic or not) to support patient care as well as communication, decision-making, and care coordination in various physical environments across multiple organizations. To tackle this complexity, the Institute of Medicine (IOM; now the National Academy of Medicine), recommended that oncology teams routinely prepare survivorship care plans (SCPs) after primary active treatment so that survivors might use them to inform subsequent clinicians and guide follow-up care.⁶

EVIDENCE TO SUPPORT CARE PLANS IS MIXED AND ADOPTION IS LOW

In more than a decade since the IOM recommendation, the oncology community has attempted to demonstrate the positive impacts of providing care plans. Recently, Maly et al⁷ demonstrated, among a population of largely low-income Latina breast cancer survivors, that nurses reviewing individualized care plans and promoting survivor engagement can result in increased physician implementation of guideline-based survivorship care. However, both positive and negative impacts have been noted in other randomized trials, depending on the outcome and population assessed.^8-13 Despite this mixed evidence, many professional and accrediting societies recommend or require provision of a care plan,^14-16 perhaps partly because survivors and primary care providers (PCPs) report that they want the information contained within care plans.^17,18 Unfortunately, adoption and implementation of care plans and care planning processes have generally remained low. Estimates vary, but most survivors and PCPs do not seem to receive them.^19-21

CURRENT IMPLEMENTATION CHALLENGES

Birken et al²² recently reported on a qualitative study that investigated strategies to improve the implementation of care plans. By using data reported as part of the Quality Oncology Practice Initiative (QOPI) metrics, the authors identified programs that developed and delivered care plans at least a moderate percentage of the time (known as moderate performers) and those that did so at a very low rate (known as low performers). Those who did not provide any care plans were excluded. Birken et al then conducted interviews in an attempt to understand how the strategies differed on the basis of performance group and how these differences might have contributed to the relative success of each performer. They found that the better performers used the following strategies: they proactively addressed care plan requirements, leveraged requirements to improve survivorship care, set internal targets, automated implementation, had active leaders and champions, and tasked specific and appropriate employees with implementing the care plan.

Birken et al²² identified important limitations: that moderate performers did not necessarily provide the care plans they created to survivors and that the QOPI data were relatively old, being pre-2014 and primarily collected before the 2012 Commission on Cancer requirements²³ regarding care plan provision. In addition, the performance metric used to define moderate versus low performers was confined to provision of care plans (yes/no) and to whom the care plan was given (eg, provided to survivor or not, provided to PCP or not). These performance metrics do not incorporate any assessment of the care plans themselves or care planning visits nor do they incorporate any downstream impacts on health outcomes. Nevertheless, the authors identified strategies that cancer programs might use to increase the successful implementation of care plans. The authors also argue for future research that investigates how cancer programs can proactively address care plan requirements, how programs can ensure that the responsibility for implementing care planning does not fall on a single employee, and how programs can foster leadership to prioritize implementation.

LESSONS LEARNED

The survivorship care planning work system⁵ is a complex, multilayered model involving multiple individuals (oncologists, nurses, survivors), environments (offices, inpatient units, homes), organizations (health care systems, national policy makers), tools (care planning software, health records systems, apps), and tasks (collecting data, creating SCPs, delivering SCPs, providing survivorship care). Untangling the facilitators and barriers to survivorship care planning processes often proves challenging. Furthermore, because of work system variability, it can be difficult to translate and apply such findings from the work systems of other health care organizations to one’s own. We sum up the lessons learned from Birken et al²² as (1) identify appropriate individuals to provide care plans, (2) give clinicians the resources they need to help them develop and provide those care plans, and (3) ensure that health care organizations and key players value this. For instance, moderate performers reported automating aspects, such as being able to query their electronic health record (EHR) or cancer registry to identify eligible survivors, or using the EHR to prompt clinicians to develop or deliver the care plan. These resources decreased the time and effort required to track who did and who did not need a care plan. Such automation requires that health care organizations provide the support and resources to complete EHR programming and to ensure its fit with clinical workflows (eg, that clinicians can appropriately and efficiently enter information.)

Importantly, resources alone are not sufficient to support care planning or even care plan development and provision. The work system needs to support and sustain care planning. There may be barriers to the adoption, implementation, and sustainability of care planning activities in the work system, such as the development of new clinical workflows that will support and sustain care planning activities, and they need to be identified and mitigated. For example, workflows may be needed for entering survivorship data into the EHR to support auto-population in the care plan, which requires support from the organization to identify the individuals responsible, the tasks to complete, and the availability of tools and technology to complete those tasks. Providing such support requires that organizations value care planning, which is likely why the moderate performers reported that they had champions and that they leveraged accrediting body requirements.

At a minimum, programs seeking to implement care plan provision must avoid fragmentation within their own work system. Programs should focus on designing or redesigning the work system and processes to support integration of survivorship activities with other clinical activities so they can be efficient and effective while providing high-quality service. Birken et al²² note that even moderate performing programs exhibited significant separation and fragmentation between the preparation and the provision of care plans. This was perhaps best exemplified by their failure to provide the prepared care plans to survivors. Therefore, we would argue for some caution about using the strategies that these programs used, lest we fall prey to their limitations.

These practices chose to participate in the QOPI survivorship metrics and consented to participate in this research; such decisions argue for an interest in care planning based on this self-selection. Yet of the 45 consenting programs, only 14 provided reliable data. Within those 14 programs, only two reported delivering care plans to any survivors. This is inconsistent with the original intent of care plans as envisioned by the IOM. It is unknown whether the moderate performers in this study provided quality care plans or care planning services. We question whether these care plans were produced as pro forma documents so the agency could meet accreditation guidelines for delivery of care plans, as the authors discovered in previous research.²⁴ Birken et al²² comment on this focus on delivering care plan documents over actual care planning, with reference to the Commission on Cancer’s Standard 3.3 requirements. Standard 3.3 has undergone multiple revisions¹⁶ since 2012, with decreasing emphasis on the percentage of survivors receiving care plan documents and increasing emphasis on survivorship programs (and thus, presumably, increasing emphasis on survivorship care planning.)

The findings of Birken et al²² raise the question: Why aren’t we doing better than this? The interviews captured some reasons for why survivorship care planning has perhaps not enjoyed greater success. For instance, certain programs may have hired extra temporary staff to create care plan documents. Such staff would likely operate in isolation from the treating team, which would result in a fragmented care delivery system. Hiring extra staff is typically unsustainable, and care plans seem more prone to have missing information and errors when they are created in isolation from the treating team.²⁵ A better approach might be to integrate data capture within existing workflows and leverage those processes for multiple benefits. For example, disease stage and drugs being administered can be captured discretely within an EHR. This discrete data can populate note templates and care plans and thus trigger automated reminders and relevant decision support. The technical capabilities exist, but we must build out the framework to enable and leverage data capture, along with ensuring clinician buy-in to complete this capture.

THE WAY FORWARD

Considered collectively with existing survivorship literature, the study by Birken et al²² suggests that we should strive to centrally integrate care planning processes that can demonstrably enhance care coordination and communication within the cancer health care delivery work system. These processes should start at diagnosis rather than being treated as afterthoughts. In such a system, we could stop worrying about just checking the box for care plans and instead concentrate on improving survivor health outcomes.

AUTHOR CONTRIBUTIONS

Conception and design: All authors

Collection and assembly of data: Mary E. Sesto

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Continued Challenges to the Adoption and Implementation of Survivorship Care Plans

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

Amye J. Tevaarwerk

Other Relationship: Epic Systems (I)

Mary E. Sesto

No relationship to disclose