Journey Forward: The New Face of Cancer Survivorship Care

Published Online: May 13, 2011
Jennifer Hausman, MPH; Patricia A. Ganz, MD; Thomas P. Sellers, MPA; and Joel Rosenquist, MPA
Identifying the Need

In light of new and more effective medical advancements, many cancers are now being recognized and treated as chronic conditions, with real and ongoing long-term physical and psychosocial health consequences.1 The 2005 report from the Institute of Medicine (IOM)1 identified the need for ongoing late- and long-term effects monitoring, yet the report found that survivors are often lost in transition after active treatment because of both lack of awareness about survivorship needs and poor coordination of care between oncologists and primary care physicians (PCPs). Care is often fragmented and poorly coordinated because most patients are cared for by community clinicians and are not seen within an integrated healthcare delivery system.

Many of the 12 million survivors of cancer2 in the United States are unaware of their changed healthcare needs. Those who are aware often have difficulty navigating a system that was not designed to address their needs.1 Fortunately, patient needs and concerns are becoming more integral to cancer care. Studies have shown that patient-centered care has the potential to rectify the barriers outlined by the IOM, improve patient satisfaction and the quality of care and health outcomes, and decrease healthcare costs.3

This new focus on patient-centered care has begun addressing many of the issues that survivors of cancer face, and it represents a significantly different approach to the delivery of survivorship care through the introduction of facilitated dialogue between the patient and providers. Changing the culture of oncology by involving the patient in shared decision making requires a combination of efforts across key areas: informed and involved patients, receptive and responsive health professionals, and a supportive healthcare environment.4

One specific strategy to change practice and facilitate posttreatment communication and coordination is the development of survivorship care plans, which include comprehensive treatment summaries and follow-up care plans that are clearly and effectively explained.1 Along with detailing the disease and its treatment regimen, a plan promotes patient-centered care by providing an assessment of the survivor’s psychosocial needs and recommending resources, preventive behaviors, and interventions.

Yet, although there is general consensus that survivorship care plans hold promise in addressing post-treatment care, a preliminary market research focus group indicated that plans have not seen widespread use, largely because many patients and PCPs are simply not aware of them and oncology professionals have considered them too time-consuming and burdensome because of their complexity and paper-based format.5,6

A New Model for Change

Among its several recommendations, the 2005 IOM report called for a joint effort by healthcare providers, patient advocates, payers and health plans, employers, and sponsors of research to raise awareness of the needs of survivors of cancer, to establish survivorship as a distinct phase of cancer care, and to ensure the delivery of appropriate care.1 In response, the American Society of Clinical Oncology (ASCO) began developing survivorship care plan templates. Other tools were subsequently developed, such as the LIVESTRONG Care Plan (powered by Penn Medicine’s OncoLink [Philadelphia, PA]), NursingCenter.com’s Prescription for Living (Lippincott, Williams & Wilkins, Ambler, PA), and homegrown solutions to respond to the need for greater survivorship care planning.

In early 2007, the pooled knowledge, relationships, and resources of WellPoint, the University of California, Los Angeles (UCLA) Jonsson Comprehensive Cancer Center, the National Coalition for Cancer Survivorship, and Genentech formed the Journey Forward program, which seeks to:

• change the way survivorship care is delivered;

• establish a new standard of care for survivors of cancer;

• enhance patient and physician understanding of late- and long-term effects of cancer treatment and survivorship; and

• improve the continuity and coordination of care.

With multiple perspectives and differing abilities, the 4 organizations lend their strengths and create synergy to address the needs of all members of the oncology community—providers and patients—and policy makers.

WellPoint brings to the collaboration its ability to reach out to broad networks of providers; to use provider satisfaction surveys to gauge reactions to the implementation of survivorship care plans and assess preparedness to treat long-term survivors of cancer; and to use patient surveys to assess satisfaction with the Journey Forward toolkit and the intention to request a survivorship care plan from providers. The National Coalition for Cancer Survivorship represents the voice of survivorship and maintains key relationships with policy makers, which are essential to improving the quality of survivorship care. The UCLA Jonsson Comprehensive Cancer Center contributes a considerable history and body of survivorship care planning research through the involvement of Patricia Ganz, who is widely known as a pioneer in the post-treatment movement. Genentech provides a strong track record of oncology support programs that address issues faced by patients and providers.

Finally, reflecting the critical role of nursing professionals in the delivery of survivorship care, the Oncology Nursing Society—representing more than 35,000 registered nurses and other healthcare providers—is planning to join the collaborative, thereby extending its reach.

Evidence-Based Initiative

The collaborating organizations have developed Journey Forward to enable healthcare providers to quickly and easily create customized treatment summaries and follow-up care plans to enhance communication and coordination, improve post-treatment care, and empower patients to be more involved in their survivorship experiences.

On the basis of the IOM’s recommendations and the availability of the ASCO surveillance guidelines and treatment plan and summary templates, the collaborative  developed the Survivorship Care Plan Builder (SCPB), a software tool used to create treatment summaries and care plans, the Journey Forward Patient and Provider Toolkits used to disseminate the tool, and other resources. The SCPB runs on Windows platforms, including Windows XP, Windows Vista, and Windows 7. Care plans produced by the SCPB can be exported to Microsoft Word, to Microsoft Excel, and to PDF format. Patient  data—which can be stored on the user’s local hard drive or on a secured, internal network drive designated by the user—are saved as an XML file.

The goal of the Journey Forward program is to provide efficient ways to facilitate and simplify communication between doctors, clinicians, and survivors. The sharing of the  Journey Forward plan for follow-up care presents an opportunity for open, honest discussions between providers and survivors and allows the latter to voice needs and concerns, thus empowering survivors to be more involved in their care. When given to other healthcare providers, the plan facilitates a handoff and provides adequate resources so other providers feel more knowledgeable and better able to deliver appropriate survivorship care. In addition to addressing the need for more patient-centered post-treatment care, Journey Forward survivorship care plans have the potential to impact cost as well as quality of care by reducing duplicate, excess, and inappropriate testing by supporting screenings rather than more costly interventions. Journey Forward collaborators anticipate that outcome research will be conducted to explore these hypotheses. Specifically, Journey Forward aims to:

• summarize and communicate what transpired during cancer treatment;

• describe known and potential late- and long-term effects of cancer treatments with expected time course to enable monitoring;

• convey to the survivor and other providers what needs to be done to promote a healthy lifestyle; and,

• help prevent disease recurrence, decrease the risk of other comorbid conditions, and ensure higher-quality cancer care.

Journey Forward resources include the SCPB software tool for providers as a centerpiece that empowers oncology professionals to generate custom care plans in a fraction of the time it would take to do so longhand. The SCPB captures information essential to post-active treatment, presents it in a manner easily assimilated by patients and their PCPs, and assists oncologists and PCPs in delivering follow-up care (Appendix A1).

The Journey Forward SCPB—adapted in part from the ASCO Chemotherapy Treatment Plan and Summary templates and the ASCO Survivorship Care Plan Surveillance Guidelines for patients with breast and colon cancers—provides electronic templates with drop-down menus that can be personalized for individual patients (Appendix A2). Current versions of the Journey Forward SCPB include breast and colon cancer templates and a generic version. Additional tumor- specific templates are planned using templates that have been vetted by ASCO.

Finally, to empower the survivor of cancer, Journey Forward resources include a patient toolkit with materials such as “Tips on Talking With Your Doctor,” which encourages patients to ask oncologists for a survivorship care plan (Table; Appendix A3).

PDF is available on the last page.

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