journey forward survivorship care plan template

Moving forward towards a better life

Survivorship Care Plan Builder

Cancer diagnosis is, perhaps, one of the worst fears that most people dread. But with the advancement of cancer treatment procedures, the cancer prognosis rate continues to improve each year.

Following cancer treatment, most patients no longer concentrate on beating the diseases but how to adjust to everyday life. However, after a brave battle with cancer, you may be feeling battered and dispirited. But as valiant as you were while fighting the disease, aftermath care is equally vital.

But because you might be clueless about the post-cancer care you need, below are tips to improve your long-term health.

Generally, exercises are good for the body because of the following benefits:

• Boosts your mood and self-esteem
• Reduces pain
• Improves the quality of sleep
• Helps in weight management
• Increases strength and endurance

Furthermore, some studies have shown that exercises can reduce the chances of cancer recurring. And if there is one thing that recovered cancer patients what to avoid is a relapse. That said, cancer patients are encouraged to exercise.

However, the reality is that after your cancer treatment, your body hasn’t fully regained the energy levels that you used to have. But this shouldn’t bog you down. Working out doesn’t have to be difficult. Take small steps to keep you on track of an active life.

For a start, light exercises like climbing stairs and indoors jogging are physical activities worth including in your workout regimen. According to the American Cancer Society (ACS), adult cancer survivors should exercise for at least 150 minutes a week. The duration can progressively be prolonged as your body regains strength.

Sometimes, your body may feel weak, fatigued, and undetermined to undertake exercises, and that’s okay. Don’t beat yourself up too much. Your body is a bit weak as it’s still fighting the lingering side effects of cancer treatment. In such times, take rest, which is also vital for your recovery.

Pro Tip: Before embarking on any exercise, it’s advisable you talk to your health provider.

Eat a Healthy Diet

Cancer itself and the treatment can wreak havoc on your health. That’s why it’s important to resume a balanced diet as soon as you can. But what’s the best combination of foods you should take?

According to the ACS, cancer survivors’ should undertake the following diet:

• Daily intake of 2.5 cups of fruits and vegetables
• Proteins from fish, eggs, legumes, and nuts, which are low in saturated fats
• Healthy fats (including omega-3 fatty acids) found in fish and walnuts
• Healthy carbohydrates from grains, legumes, and fruits

Observing a healthy diet plays a critical role in weight management, given the fact you might have lost or gained weight during treatment. But to be on the safe side, talk to your doctor before starting your diet regimen. This is because some patients may result in using vitamin supplements, hurting them instead.

Inspire Yourself

There isn’t going to be a stronger support system around you than yourself. And the best way to uplift yourself is by appreciating the little things of life. After chemotherapy, you might have lost hair. But keep telling yourself that you will regain it someday.

Take a nature walk. Do you see tiny buds growing on trees? That could be a reflection of your own health- that one day your hair will grow again. Jot things you are grateful for and focus your thoughts on positive things in your life.

Reduce Stress

Given the close connection between your mind and body, working on your mental health after cancer recovery can’t be overstated. While the truth is that cancer survivors encounter physical and emotional factors that hamper their psyche, working towards a healthy mental state improves the quality of life.

That said, devise the below stress-coping strategies to maintain a healthy state of mind:

• Meditation and mind-relaxing techniques like yoga and mindfulness training
• Undertake exercises
• Consider counseling
• Spend time with friends and family
• Reduce alcohol intake
• Take stress-relieving medications
• Have adequate sleep and rest

Stay Away From Tobacco

From the word go, tobacco wasn’t good for your health. And whether it contributed to your cancer or not, from now on, shelve the habit once and for all. Tobacco use increases the risk of several forms of cancer and could increase the likelihood of your cancer recurring.

Find Support

While support groups aren’t everyone’s cup of tea, some people may find comfort and camaraderie in them. There is the motivation and relief that come with meeting and sharing ideas with people undergoing the same experience as you. Sometimes, you can even forge relationships that can last for a lifetime.

Consider reaching out to your family and friends when feeling overwhelmed. Your loved ones can offer emotional and physical support. They can encourage you when downbeat. They can also help you prepare meals and even suggest exercising together.

As a cancer survivor, you can’t wait to regain your healthy self. And has seen, the health recommendations aren’t any different from someone who wants to improve his life. Exercises, eating a balanced diet, avoiding tobacco, getting quality sleep, and maintaining a healthy weight are handy tips to help your body feel half your age and forget that you had cancer.

Good luck to a healthy post-recovery lifestyle.

About Author

Anne Langhorne

Anne is an ex doctor who has a passion for the health & financial fields. Anne quit her job as a doctor back in 2011 and put more of her focus into the financial field. She is known for her excellent investment choices & enjoys helping others make smart investments.

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Your Journey > Survivorship > Survivorship care plans

• Survivorship care plans
• 8 Min. Read
• Medical Review: Lori B. Ranallo, RN, MSN, APRN-BC, CBCN

When you finish initial treatment, you may be overwhelmed with questions about your future health. You may have concerns because you aren’t seeing your providers as often as before or feel unsure how to move forward with your care.

One tool that can help is a survivorship care plan, a post-treatment care plan. This is a written report with details about your breast cancer treatment, standards for follow-up care and methods to maintain your health. Survivorship care plans improve communication between you and your cancer care team, and between your cancer care team and other doctors who provide ongoing care for you after you finish breast cancer treatment.

Survivorship care plans are becoming more common. Many are based on findings from a 2005 report from the Institute of Medicine ,  From Cancer Patient to Cancer Survivor: Lost in Transition .  As of January 2015,  facilities accredited by the American College of Surgeons' Commission on Cancer  must offer you a survivorship care plan. But even if your provider does not offer it, you can  start a survivorship care plan yourself and bring it with you to your next doctor’s appointment.

Basics of survivorship care plans

A survivorship care plan is a written document for you to keep. You may bring it with you to appointments with your primary care doctor , gynecologist, cancer team or other doctors who care for you.

Survivorship care plans help you keep all your information in one place. They help guide your providers if you develop health issues later in life that could be related to breast cancer treatment. You also have a record of your treatment if your doctor leaves, if you move or if your records get destroyed.

Your plan is unique to you and your breast cancer treatment, but all plans should have:

• A treatment summary, with information about the cancer (the size, stage , type, grade , and so on), the names and phone numbers of the providers who treated you, and the types and amounts of treatments  you received
• Guidance about how to prevent new cancers, and ways to test and screen for breast cancer recurrence
• Information about long-term and late side effects  that could result from breast cancer or its treatments, and methods to manage them

The survivorship care plan does not replace your medical record, but it has key information for any providers who might treat you in the future. Your plan might include:

• Information about your breast cancer diagnosis and treatment
• Ways to manage and detect late side effects and emotional concerns
• Standards for monitoring for a return of the breast cancer
• Ways to screen for other types of cancer
• Lists of places to go or doctors to see for your ongoing care
• Tips for health issues of possible concern to people who have had breast cancer, such as genetic testing  and  reconstruction
• Ideas to help you manage your overall health with diet, nutrition , exercise and more
• Resources for financial and insurance concerns

A post-treatment care plan is a living document. It grows over time as your health changes and you get further away from your breast cancer diagnosis.

Getting started

A member of your cancer care team, usually a doctor or nurse , should offer you a survivorship care plan. Using your medical records, your provider writes the plan and then reviews it with you. You may receive it at any point during your care, but the plan is usually offered as you finish initial treatment.

The Commission on Cancer standard only requires survivorship care plans to be offered to people with early-stage breast cancer . But many centers offer plans to people with metastatic disease as well. If you have stage IV breast cancer and want a survivorship care plan, speak with your doctor or nurse.

If you are not offered a survivorship care plan, ask your healthcare provider to help you create one. You can create a plan at any time. If your treatment ended a while ago, you may need to gather your medical records from other doctors. Some online resources you and your provider may use to build a plan include:

• American Society for Clinical Oncology , with videos, information and resources
• Journey Forward , with separate resources for you and your care team to build a plan
• LiveStrong and OncoLink's care plan , to jump start a conversation with your team

Update your plan any time you have a major change to your health—even years after you create the survivorship care plan. Ask your provider to revise your plan after follow-up tests and surgeries or if you have long-term side effects.

Related resources

• Survivorship

As treatment comes to an end, many people long for continued connection to others who understand what they’ve been through. These are the people who share in grieving the losses of breast cancer, integrating the experience into their lives – and celebrating the promise of a different future.

Secondary cancers

In very rare cases, part of your breast cancer treatment can cause you to get a different cancer in a different part of your body, usually many years later. This is called a secondary cancer.

Why fear of recurrence happens

Fear of cancer recurrence is prevalent post-breast cancer. Its impact varies, influenced by individual health history, information access, social support, coping mechanisms, and other factors.

Common fear of recurrence triggers

Certain events, anniversaries, or activities in your life could remind you of cancer and trigger, or bring out, your concerns about recurrence.

Managing your fear of recurrence

There are many different ways to cope with fears after treatment is over. Try different strategies to find the ones that work best for you

Getting support for fear of recurrence

Talking about your fears will help you process them. Still, you may struggle to find someone you feel comfortable sharing your fears with.

Fear of recurrence

Fear of recurrence, or fear of the cancer coming back, is one of the most common worries among women with breast cancer.

Signs of recurrence

During breast cancer treatment and well after it has ended, fear of recurrence is a concern for nearly every person diagnosed with early-stage breast cancer.

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Reviewed and updated: November 12, 2014

Reviewed by: Lori B. Ranallo, RN, MSN, APRN-BC, CBCN

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An Updated Survivorship Care Planning Template and Identifying Barriers to Implementation

Recently, the American Society of Clinical Oncology (ASCO) released an updated cancer survivorship care planning (SCP) template—news that was captured by several medical online news outlets including Healio , Medscape , and Cancer.net .

Survivorship care planning is a process of cancer care delivery that NCCS has advocated for over the last 20 years. In follow-up to a 2005 Institute of Medicine (IOM) report released in 2005, collaboration among UCLA, NCCS, the Oncology Nursing Society, WellPoint, and Genentech was formed to create a program called Journey Forward with a goal of creating and distributing templates for post-treatment survivorship care planning. This service is in accordance with the IOM recommendations as a best practice for cancer survivors.  Journey Forward used the ASCO templates as a basis for developing the a suite of tools to help providers implement SCPs in practice.

ASCO originally started developing SCP templates nearly a decade ago and in that time, other advocacy organizations and cancer centers developed their own. This most recent update was developed by a joint workgroup of the ASCO Cancer Survivorship Committee and the ASCO Quality of Care Committee. The current template evolved from a multi-stakeholder consensus conference convened in September 2013.

The updated template is streamlined and more user-friendly. At just two pages, it aims to assist survivors in tracking the major aspects of their cancer treatment and recommendations for follow-up care. However, while the update is certainly an improvement, we still remain cautious of any assumption that this will result in a higher rate of usage, as many barriers still exist to using this or other tools.

In the ASCO Clinical Expert Statement on Cancer Survivorship Care Planning released this month, four barriers to implementation were highlighted, including the substantial time required to complete a SCP, inadequate reimbursement for the time and resources required to completed the SCP, challenges in coordinating care among providers and between providers and survivors, and incomplete penetration of electronic health record systems in the marketplace that can facilitate SCP completion.

These barriers were taken into consideration during the consensus meeting and informed the design of the new SCP tool. Prior to releasing the updated template, a pilot study among ASCO Quality Oncology Practice Initiative (QOPI) practices was completed and found that the SCP took an average of 30 minutes to complete. QOPI practices also found that it was easy to complete, clear in its questions, included important elements for survivorship care planning, and useful. However, what this survey did not examine was the likelihood of use by practices if not reimbursed. ASCO did attempt to encourage use of the SCP template by simplifying it, though we maintain that without proper reimbursement, adoption of survivorship care planning as a standard practice will be insufficient. Reimbursement reform must remain a priority to bring survivorship care planning to fruition.

The bottom line remains that if survivors do not ask for a care plan, it will likely not become the standard practice that we feel is essential to best care in post-treatment planning for cancer survivors. Oncology practices, internal medicine providers, and patient advocacy groups have a responsibility to inform survivors of this tool. NCCS will continue to bring awareness to the importance of the survivorship care planning process and all similar efforts to bring quality improvement to cancer care.

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Journey Forward: The New Face of Cancer Survivorship Care

• Thomas P. Sellers, MPA
• Joel Rosenquist, MPA

WellPoint, UCLA's Jonsson Comprehensive Cancer Center, the National Coalition for Cancer Survivorship (NCCS) and Genentech collaborated to develop Journey Forward, a first-of-its-kind program for coordinating post-treatment care.

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 cancer 2 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.

Appendix A1

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 A2

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 ( ). 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.

Appendix A3

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 ( ; ).

The collaborative convenes regularly to ensure that Journey Forward resources remain current, targeted, and highly relevant to each stakeholder in the oncology community and to continue driving the adoption of survivorship care planning. The Journey Forward program is, and will be, provided free of charge to individuals and institutions.

Evidence Based

Leveraging WellPoint’s affiliated health plans’ provider networks and access to plan members, the Journey Forward program was developed and continues to evolve on the basis of survey results, focus group findings, and ongoing feedback about the program. Notably, WellPoint’s affiliated health plans’ annual internal provider satisfaction surveys since 2006 continue to demonstrate that PCPs feel better prepared to handle the transition and any late cancer effects when they receive timely end-of-treatment summaries and survivorship care plans. 7 In 2007, 4 patient focus groups were conducted, including male and female survivors of colon and breast cancers treated with various modalities. 6 During this same time period, in-depth interviews were conducted with California and Colorado healthcare providers, including oncologists, oncology nurse practitioners, PCPs, and obstetrician/gynecologists. 5 To provide strategic direction and vital feedback on program materials, a Journey Forward advisory board meeting was held in October 2007 with key opinion leaders from national organizations and cancer centers, community oncology and primary care providers, survivors of cancer, and representatives from the Journey Forward collaborative.

Evidence of Change

Providers and survivors of cancer are implementing Journey Forward, given its public availability since 2009, promotion through conferences, and mailings to targeted adopters. As of August 2010, the Journey Forward collaborative metrics indicate that more than 4000 healthcare professionals are actively using the SCPB. The number of users continues to increase as more providers and survivors are made aware of its availability. In 2010, WellPoint conducted a quantitative research study 8 among survivors of breast and colon cancers who were members of its affiliated health plans to assess satisfaction with the Journey Forward program and materials. Study conclusions led the collaborative to promote survivorship care planning earlier in treatment cycles or just at the conclusion of active treatment.

Challenges Ahead

The Journey Forward program is not without its challenges. Notably, additional scientific evaluation is needed to validate outcomes and demonstrate the impact and value of receipt of a treatment summary and care plan. Additionally, evidence-based surveillance guideline research and survivorship data for many cancer types are lacking and are necessary to enhance the value and benefit of survivorship care plan implementation.

In 2010, the Centers for Disease Control funded 2 institutions (the University of North Carolina at Chapel Hill [Chapel Hill, NC] and a partnership between Dartmouth College [Hanover, NH] and the University of Vermont [Burlington, VT]) for special interest project grants to advance the understanding of best practices in survivorship care planning by examining the feasibility of completing and delivering an end-of-treatment consultation note in accordance with IOM guidance, specifically using the Journey Forward tool. The objectives of the special interest project grants are to:

• implement a survivorship care plan using Journey Forward material that includes the essential care plan components outlined in the 2005 IOM report;

• define how the information in the survivorship care plan will be obtained, who will be responsible for completing the plan, and who will communicate the plan to the survivor;

• pilot the survivorship care plan in a clinical setting, evaluate the process of plan completion from the provider’s perspective, and gauge the utility and comprehensibility of the plan from a survivor’s viewpoint; and,

• disseminate knowledge gained from this intervention and suggest future outcome measures and studies.

Future challenges include the incorporation of the SCPB into existing electronic medical records (EMRs). As EMRs become the standard in practice and case management, addressing this need will be critical to widespread adoption of Journey Forward tools. The collaborative continues to explore ways to overcome this potential barrier with current efforts working with EMR vendors and the National Cancer Institute and its EMR initiative.

Finally, there is the challenge of adequate reimbursement for oncology providers to prepare survivorship care plans for patients; time spent delivering the survivorship care plan is reimbursable. However, there are 2 efforts underway to incentivize survivorship care planning including revised accreditation standards by the Commission on Cancer to add new survivorship care planning requirements in 2012 and a reintroduction of the Comprehensive Cancer Care Improvement Act legislation that will provide Medicare reimbursement for completing survivorship care plans.

Changing the Practice of Survivorship Care: An Innovative Collaboration

The Journey Forward collaboration is unique in its member diversity and mission, because it is focused on the improved coordination of post-treatment care through the use of survivorship care plans. Few, if any, models of this scope exist within the cancer community. Although the value of collaboration is recognized, this model of working together with such diverse but essential stakeholders to impact practice behavior represents a unique approach to improving the quality of survivorship care. As with any healthcare innovation, it may take 10 to 20 years for the acceptance and institutionalization of this approach. Given the increasing emphasis on patient-centered care, the tools and strategies that are made available through Journey Forward will facilitate this approach for patients who have recently completed cancer treatment and ameliorate concerns about their being lost in transition.

Authors’ Disclosures of Potential Conflicts of Interest: The authors indicated no potential conflicts of interest.

Author Contributions Conception and design: Jennifer Hausman, Patricia A. Ganz, Thomas P. Sellers, Joel Rosenquist. Manuscript writing: Jennifer Hausman, Patricia A. Ganz, Thomas P. Sellers, Joel Rosenquist. Final approval of manuscript: Jennifer Hausman, Patricia A. Ganz, Thomas P. Sellers, Joel Rosenquist.

Jennifer Hausman, MPH, is Clinical Research Manager, WellPoint. Patricia A. Ganz, MD, is Professor, University of California, Los Angeles, Schools of Medicine and Public Health, Division of Cancer Prevention & Control Research, Jonsson Comprehensive Cancer Center. Thomas P. Sellers, MPA, is President and Chief Executive Officer, the National Coalition for Cancer Survivorship. Joel Rosenquist, MPA, is Senior Manager, Genentech.

Address Correspondence to: Jennifer Hausmann, MPH, Clinical Research Manager, WellPoint, Inc., 21555 Oxnard St, AC12H, Woodland Hills, CA 91367. E-mail: [email protected].

1. Hewitt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition. National Academies Press, Washington, DC, 2006

2. Altekruse SF, Kosary CL, Krapcho M, et al (eds): SEER cancer statistics review, 1975-2007. National Cancer Institute, Bethesda, MD, 2010 http://seer.cancer.gov/csr/1975_2007

3. Epstein RM, Franks P, Fiscella K, et al: Measuring patient-centered communication in patient-physician consultations: theoretical and practical issues. Soc Sci Med 61:1516-1528, 2005

4. Epstein RM, Fiscella K, Lesser CS, et al: Why the nation needs a policy push on patient-centered health care. Health Affairs 29:1489- 1495, 2010

5. Journey Forward: Survivor focus groups and in-depth interviews with health care providers. Decision Development, Evanston, IL, 2007

6. Journey Forward: Focus groups with cancer survivors. Kinzey & Day, Richmond, VA, 2007

7. WellPoint: Annual provider relationship survey 2006-2010: Customer viewpoint program. Navigant Consulting, Chicago, IL, 2010

8. WellPoint: Journey Forward Toolkit Evaluation Report. CA Walker Research Solutions, Glendale, CA, 2010

Galvanizing Community Oncology Through Advocacy, Empowerment, and Stewardship

Coverage from the Community Oncology Alliance Community Oncology Conference, held April 4-5, 2024, in Orlando, Florida.

Examining Low-Value Cancer Care Trends Amidst the COVID-19 Pandemic

On this episode of Managed Care Cast, we're talking with the authors of a study published in the April 2024 issue of The American Journal of Managed Care® about their findings on the rates of low-value cancer care services throughout the COVID-19 pandemic.

Implementing Treatment Escalation Plans in Oncology Care at Admission Boosts Uptake, Study Finds

Treatment escalation plans can successfully be implemented into routine oncology practice, according to one study.

Oncology Onward: A Conversation With Penn Medicine's Dr Justin Bekelman

Justin Bekelman, MD, director of the Penn Center for Cancer Care Innovation, sat with our hosts Emeline Aviki, MD, MBA, and Stephen Schleicher, MD, MBA, for our final episode of 2023 to discuss the importance of collaboration between academic medicine and community oncology and testing innovative cancer care delivery in these settings.

Center on Health Equity and Access: April 2024

Office Procedures for Older Adults by Physician Associates and Nurse Practitioners

The authors probed Medicare Part B data to explore outpatient clinical procedures performed by physician associates and nurse practitioners and report the trends from 2014 through 2021.

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The Cancer Registry's Role in Creating Survivorship Care Plans

by Barbara J. Dearmon, BS, CTR

Survivorship Care Plans  are required by facilities accredited by the American College of Surgeons Commission on Cancer (CoC) and the National Accreditation Program for Breast Centers (NAPBC). These plans assist patients in being active participants in their post-treatment plan of care. The Survivorship Care Plan (SCP) helps promote continuity of care, provides a plan for future care, alerts the patient to delayed effects long after treatment has concluded, and provides a source document to share with future providers. Having a SCP helps patients maintain appropriate follow-up, such that late effects can be properly managed and recurrences identified and treated quickly. The SCP also provides the opportunity to address psychosocial and other health issues related to the cancer experience. The CoC’s Survivorship Care Plan requirements are outlined in Standard 3.3; the NAPBC’s requirements are detailed in Standard 2.20.

St. Vincent’s Medical Center Riverside in Jacksonville, Florida, is accredited by both the CoC and NAPBC. To meet these organizations’ SCP standards, St. Vincent established a Survivorship Committee in 2014 to examine the requirements and develop a process for disseminating SCPs and comprehensive treatment summaries to cancer patients who completed cancer treatment at the facility. The process also included a system to monitor and evaluate these efforts annually. The Survivorship Committee was multidisciplinary and included representatives from administration, cancer registry, information services, medical oncology, radiation oncology, surgery, clinical staff (physicians and nursing), and the survivorship nurse navigator.

The Survivorship Committee unanimously agreed that the cancer registry was the most complete data source for creating SCPs and treatment summaries to meet compliance with both standard-setting organizations. The cancer registry currently captures the majority of required data elements that will ultimately be included in these care plans. Some cancer registry software applications have the ability to interface data into a preformatted care plan template or Word document. St. Vincent’s reviewed several resources and decided to use Journey Forward , which interfaced easily with its cancer registry database. Policies and procedures were established to guide the process. Specific policies outlined the roles of the cancer registry staff and the survivorship nurse navigator and detailed the purpose, case eligibility, and dissemination process for the Survivorship Care Plans.

Role of the Cancer Registry:

• The cancer registry generates a list of eligible cases abstracted using the cancer registry software and exports the data into Journey Forward.
• The information for the care plans derived from the cancer registry database includes: cancer diagnosis, demographics, first course of treatment, stage of disease, and treating physicians. Treatment information to be captured includes chemotherapy, drugs administered (start and end dates), hormones, immunotherapy, radiation, and surgery.
• Follow-up information on date-of-last contact is captured on the template. Cases are selected retrospectively, eight months from date-of-first contact at facility.
• The cancer registry interfaces (exports) registry data into Journey Forward’s breast, colon, and lung templates.
• For the primary sites that to do not correspond with Journey Forward templates, the cancer registry saves the information in a secured Excel file on a shared drive. The survivorship nurse navigator, with assistance from the cancer registry, manually enters demographics, treatment, stage, physician contact, and prognostic indicators into the Journey Forward’s  generic template. The completed templates generated monthly from the registry database are saved in a folder located on the secured shared drive for the survivorship nurse navigator to access.

Role of the Survivorship Nurse Navigator:

• The survivorship nurse navigator accesses the shared drive and selects the current cases for the month. The survivorship nurse navigation obtains from patient records and/or the physician office the clinical documentation necessary to complete the survivorship care plan and treatment summary.
• The survivorship nurse navigator reviews information for accuracy and contacts the cancer registry if there are questions related to data interfaced from the registry database.
• The survivorship nurse navigator works with outside physician offices to obtain necessary information to complete the remaining care plans.
• The survivorship nurse navigator contacts the patient and offers an appointment to review the SCP in-person.
• If the patient declines an appointment, a hard copy of the SCP with a cover letter and contact information is mailed to both the patient and the patient’s primary care provider.
• All correspondence with the patient is documented in Nursenav Oncology, St. Vincent’s nurse navigator software. In addition to generating templates in Journey Forward , clinical staff use Nursenav to chart information and all correspondence with patients.
• The survivorship nurse navigator maintains an electronic copy of all completed SCPs.

The Survivorship Care Plan process at St. Vincent’s is evaluated and monitored on a regular basis by the survivorship nurse navigator and the facility’s Cancer Committee. Tracking to ensure compliance with the process is presented to the Cancer Committee and the breast program leadership annually at a minimum.

Implementation of a Survivorship Care Plans benefits patients, who will be better informed about the treatment they’ve received and the resources available to ensure continuity of care. There are a variety of ways for a facility to develop Survivorship Care Plans and to ensure these plans are disseminated and the needed follow-up conducted. At St. Vincent’s, the multidisciplinary team that formed its Survivorship Committee, believed the cancer registry and the survivorship nurse navigator played critical roles. As facilities develop their process for implementing SCP plans, they too may want to consider the role of the cancer registry. Resources to help a facility get started include the American Cancer Society ; American Society of Clinical Oncology ; Institute of Medicine ; Journey Forward ; LIVESTRONG ; and the  National Cancer Institute .

Guest blogger Barbara J. Dearmon, BS, CTR, is manager, Oncology Support Services, at ACCC Cancer Program Member St. Vincent’s Medical Center, Jacksonville, Florida. Note: This blog was first published in December 2017.

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Transitioning to Cancer Survivorship: Plans of Care

Recognition of the growing number of cancer survivors in the United States, combined with a greater awareness of the ongoing physical and psychosocial needs after cancer treatment, has created a groundswell of interest in designing quality care initiatives for cancer survivors.

ABSTRACT: Abstract: Survivorship care plans have received increasing attention since the 2006 release of the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition. The report strongly recommends that at completion of cancer treatment, clinicians provide patients with a summary of treatment delivered and a detailed plan of ongoing care, including follow-up schedules for visits and testing, as well as recommendations for early detection and management of treatment-related effects and other health problems. Templates have been developed by various groups to support the effort involved in complying with this recommendation. Barriers exist, such as difficulties in accessing information, preparation time involved for busy clinicians, lack of third-party reimbursement, and absence of clear guidelines for follow-up care after cancer treatment. The absence of research related to care plans and patient outcomes also calls their necessity into question. Yet, there is a growing acceptance among oncology physicians and nurses that having a plan of care is an essential component of quality survivorship care.

The 2006 Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, defined the posttreatment period as a distinct phase of the cancer experience, which requires an individualized plan of care related to the treatment delivered.[1] Informing patients about the treatment they had, what they will need going forward, and who will provide it has been identified as an effective measure to ensure a successful transition from patient to survivor.[2]

The second recommendation of the IOM report states that “patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.” Despite many practical barriers, various organizations have responded by developing templates for implementation of survivorship care plans and nurses and other providers have adopted less formal ways of providing patients with written plans.

What is a survivorship care plan? A survivorship care plan is the record of a patient’s cancer history and recommendations for follow-up care. The first part, the treatment summary, contains details of the cancer diagnosis and a listing of the various treatments administered. The details of the diagnosis should include the diagnosis date, type of cancer, location, stage, and histology, as well as the names and contact information of the providers and treatment facilities.

Treatment information should include the date range and name of the chemotherapy or biotherapy regimen, drugs, and doses (when relevant); radiation therapy, with the site treated, type of radiation, field, and dose; and any surgical procedures. Additional treatments such as bone marrow transplants and clinical trials should be recorded, as should management of outstanding complications such as chronic graft-versus-host disease following transplant. A comprehensive cancer treatment summary is important for identifying long-term health problems related to the cancer and treatment effects, particularly as the patient transitions away from oncology specialists. In the event of a recurrence or second cancer diagnosis, a record of previous anticancer therapy is essential for safe, effective treatment planning (see Figure 1, “MSKCC Summary of Cancer Treatment and Follow-Up Plan”).

The second part, the follow-up plan, contains specific recommendations for ongoing care as well as health promotional strategies. Follow-up care information includes schedules for visits with the oncology specialist and surveillance testing for cancer recurrence. These recommendations should be based on published guidelines, when available. Examples include an annual clinical breast examination and a mammogram for breast cancer survivors.[3] Colon cancer survivors should have carcinoembryonic antigen blood testing every 3–6 months for 2 years, then every 6 months for 3 years, and colonoscopy at 1 year and then as clinically indicated.[4]

Many survivors continue to experience lasting side effects of cancer and cancer treatment, such as pain, fatigue, neuropathies, and depression. The follow-up plan should identify these long-term effects and the correlating management strategies. The potential for late treatment effects, those toxicities not apparent at the end of treatment but clinically manifested at a later time, as well as recommended surveillance testing, should be noted. For example, the National Comprehensive Cancer Network (NCCN) guidelines recommend that women treated with mantle irradiation for Hodgkin’s lymphoma begin annual mammography at 40 years of age or 8 years following treatment, whichever comes first.[5,6]

An important part of the follow-up plan includes recommendations for reducing risks of future health problems. Cancer survivors are at greater risk for developing a second cancer, of either the same or another type, and screening according to national guidelines should be part of their regular healthcare.[7–9] Preventive health behaviors such as smoking cessation, alcohol and dietary modifications, and regular weight-bearing exercise have all been shown to reduce risk in cancer survivors.[10,11] Inclusion of these recommendations into the follow-up plan takes full advantage of the “teachable moment,” the phenomenon that occurs at the completion of cancer treatment, when people are most open to making changes in health behaviors.[12]

Finally, the care plan should clearly define the responsibilities of cancer-related, non–cancer-related, and psychosocial providers. One study found that one-third of cancer survivors were not sure which physician was in charge of their cancer follow-up.[13] Clear designation of who is responsible for the various aspects of care can optimize care coordination, avoid unnecessary use of resources, and ensure that care does not “fall through the cracks.”[2] Patients should be encouraged to provide a copy of the care plan to their current primary care providers and other healthcare providers throughout life.[1]

Barriers to providing care plans While most would agree that informing patients about their cancer treatment is the right thing to do, widespread adoption of care plans is met by obstacles throughout our healthcare system. Preparation of a comprehensive care plan requires access to treatment records that include pathology and operative reports, details of chemotherapy and radiation treatments, and summaries of other relevant events that occurred during cancer treatment. Because most patients are treated in community settings, care is often spread across multiple specialists and treatment facilities. One complete record does not exist.[1]

Gathering these records, particularly in the absence of an electronic system, can be challenging. Abstracting the relevant information from the records and writing the comprehensive care plan can be time-consuming and currently is not reimbursable by third-party payors.

A significant barrier to care planning is the absence of clinical practice guidelines for follow-up care. Clinical practice guidelines are essential to decrease unnecessary and harmful care and to facilitate necessary care, but without high quality evidence or expert consensus, there is reluctance among oncology organizations to make formal recommendations.[2] Currently, the American Society of Clinical Oncology (ASCO) has developed evidenced-based follow-up guidelines for breast and colorectal cancers only.

While guidelines are best when based on evidence, they can still be useful when based on consensus.[2] The NCCN has incorporated consensus-based follow-up care into some of its disease guidelines. The Children’s Oncology Group has developed comprehensive guidelines for monitoring long-term and late effects of cancer therapy for pediatric cancer survivors based on evidence where it exists, and based on consensus where it does not. Many of the recommendations are also applicable to adults.[7]

Prospective development of a treatment summary can eliminate the struggle for collection of records when treatment ends, and is a long-term goal for many organizations and practices.[1] ASCO has created sample templates for the prospective recording of treatment, as well as a one-page summary care plan containing follow-up recommendations for breast and colorectal cancers; expansion to include other cancer types is under way.[14] There is also a generic template for use with any cancer. All of the templates are available on the ASCO web site.[15]

Other groups have developed care plan templates and made them available as resources. Table 1 lists Internet-based resources for survivorship care plan development. Haylock et al.[16] highlight the opportunity for nurses to adopt survivorship care planning as part of their role in educating and counseling patients and providing continuity of care across health transitions.

A comprehensive template as well as guidelines are included in Haylock’s article and are available via the Internet.[17] The LIVESTRONG Care Plan was developed by the Lance Armstrong Foundation in partnership with the OncoLink web site of the University of Pennsylvania, which guides patients in creating their own care plans based on specific treatment information. It is quick and simple to use, and ideally the patient will develop the care plan in conjunction with the care provider.

Journey Forward is a program created by a collaboration between the National Coalition for Cancer Survivorship, the University of California at Los Angeles Cancer Survivorship Center, WellPoint, Inc., and Genentech Inc., with the common goal of improving survivorship care. The Journey Forward plan has a simple treatment summary format and guidelines for monitoring future care based on the ASCO treatment guidelines.

Passport for Care is an Internet-based care plan in development by a group from the Texas Children’s Hospital and Baylor College of Medicine. It uses the Children’s Oncology Group guidelines for the care of pediatric cancer survivors. Passport for Care is currently undergoing clinical application evaluation.

Implementation of the survivorship care plan Successful commitment to providing survivorship care plans requires a great many steps. The first step is to select an available template or create a unique design that fits with workload and institutional medical record systems. The following questions will need consideration: How will the treatment data be collected and from where? Who will be responsible for collecting and entering the data? What resources will be needed? What will be the services included in the follow-up care? What guidelines will be followed for surveillance? What patient groups will be included? When is the most appropriate time to review the survivorship care plan with patients––at the end of treatment or some time later? Should there be a formal transition visit? Will the care plan be stored electronically, and will it be sent to other providers?

All of these decisions necessarily rely on multidisciplinary collaboration. In view of the identified barriers and considerable variation in practice settings and clinical resources, simplification can prove to be an effective strategy for implementation. The short templates such as those developed by ASCO provide a simple, quick approach to the care plan while covering the core elements (see Figure 2, “ASCO Breast Cancer Survivorship Care Plan”). A more comprehensive plan that includes comorbidities and specialty care requirements is more resource-intensive, but is especially important for survivors who have undergone complex treatments and for childhood cancer survivors.[14]

The following is an example of one institution’s experience with implementation of a survivorship care plan: In 2005, Memorial Sloan-Kettering Cancer Center initiated nurse practitioner–led survivorship clinics and the provision of a care plan was incorporated into the comprehensive set of services. Plans for follow-up surveillance were developed based on the consensus of each disease-specific service or were based on published guidelines, such as the colorectal cancer follow-up guidelines from NCCN, where they exist.[18] The survivorship nurse practitioners (NPs) incorporate these guidelines into a plan for each survivor, along with cancer screening guidelines[19] and general health recommendations by age.

Evidence-based recommendations and resources for dietary modifications and physical activity are included.[11] Individualized needs are also identified in the plan, particularly for patients with late effects and comorbidities, with clear identification of the needs attended to by the NP vs the primary care or other specialty providers. The care plan is reviewed with the patient and family at the first survivorship visit and a copy is provided to the patient. In addition, the NP sends a copy of the care plan and a letter summarizing the visit to the primary care provider and other providers identified by the patient. The care plan then becomes part of the survivor’s medical record and can be updated as needed. Current initiatives are under way to assess patient and provider satisfaction with the care plan.

The Nurse’s role in survivorship care planning Nurses are key participants in the successful integration of survivorship as a distinct phase in the cancer care trajectory proposed by the Institute of Medicine report.[1] Among the defining elements of oncology nursing are the provision of guidance and support to patients during cancer treatment. Oncology nurses routinely provide patients with a plan to ensure the best possible treatment outcomes with a focus on prevention and management strategies for safety, comfort, and control over the quality of their lives. As patients complete cancer treatment, nurses can extend their role by preparing patients for a transition from the safety net of their oncology care providers and for achieving a lifetime of good health.

Nurses can participate in the formal provision of care plans in a variety of ways, depending on institutional resources and support. Again, multidisciplinary collaboration on development of surveillance guidelines and screening schedules is essential. Support for the time to prepare and review the plan with patients also is necessary for sustaining such an initiative.

Identification of the most appropriate time for reviewing the care plan with patients is another important consideration. Nurses may choose to focus on parts of the plan concerning immediate recovery needs and future appointment schedules on the last day of chemotherapy treatment, and save the broader discussion of health- care recommendations for a later visit. Physicians and nurses may share these discussions. A consistent approach across the practice setting is the most efficient method for ensuring appropriate implementation of the care plan.[14]

A further barrier to providing care plans is the absence of evaluation data about their usefulness. Despite the lack of evidence, the Institute of Medicine report concluded that, as an element of care, they “simply made sense,” that they appear to be valid, and they “can reasonably be assumed to improve care unless and until evidence accumulates to the contrary.”[1] However, the IOM report also acknowledged that research is needed to assess the impact and costs associated with care plans, as well as their acceptance by patients and providers.

Other research recommendations include evaluation of patient desire for information, levels of satisfaction with the transition of care and receipt of information, variation in follow-up practice patterns and outcomes, disparities in quality of posttreatment care, differences in care plan formats and knowledge and satisfaction, involvement and satisfaction of specialist and primary care providers, and optimizing communications among patients and providers.[2] Development of information technology can ensure greater access to medical information for care planning and produce data that would inform policy decisions about reimbursement for survivorship care services, determine the cost- effectiveness of care plans related to improved patient outcomes, create and validate quality measures related to care planning, and facilitate creation of care plans in clinical settings.[2]

The convergence of multiple factors––an aging population, the increasing number of cancer survivors, and the predicted shortage of primary and oncology care providers in the US––raises the significance of the need for coordinated care for cancer survivors. The implementation of treatment summaries and care plans can provide a method for ensuring quality healthcare.[12] Two recent initiatives call for the implementation of care plans into the standard care of cancer patients and survivors. Legislation pending in Congress, the Comprehensive Cancer Care Improvement Act , would require a survivorship care plan and insurance reimbursement for its completion. Treatment summaries were also included in the Oncology Physician Performance Measurement Set developed by ASCO and the American Society of Therapeutic Radiation Oncology with the American Medical Association Physician Consortium for Performance Improvement.[12]

Survivorship care plans serve as a communication tool between survivors and healthcare providers. It is the basis of a dialogue about what has happened and what survivors and providers can do to ensure a healthy outcome. A culture change is necessary so that providers recognize survivorship care planning as a standard and expected component of quality cancer care and patients recognize the importance of post-treatment care and adherence to recommendations.[2] Nurses are logical partners in this effort. Their knowledge and skills can contribute to the clinical delivery of quality survivorship care and the research to validate its importance and guide practice. We are pioneers in our understanding of what survivors need and how to best provide the services. Having a plan for their care is the first step towards ensuring that they have a direction forward.

References:

1. Hewittt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC, National Academies Press, 2006. 2. Earle CC: Failing to plan is planning to fail: Improving the quality of care with survivorship care plans. J Clin Oncol 24(32):5112–5116, 2006. 3. Khatcheressian JL, Wolff AC, Smith TJ, et al: American Society of Clinical Oncology 2006 update of the breast cancer follow-up and management guidelines in the adjuvant setting. J Clin Oncol 24(31):5091–5097, 2006. 4. Desch CE, Benson AB, Somerfield, MR, et al: Colorectal cancer surveillance: 2005 update of an American Society of Clinical Oncology practice guideline. J Clin Oncol 23(33):8512–8519, 2005. 5. National Comprehensive Cancer Network clinical practice guidelines in oncology: Hodgkin’s lymphoma. Available at: http://www.nccn.org/professionals/physician_gls/PDF/hodgkins.pdf. 6. Children’s Oncology Group long term follow-up guidelines. Available at: http://www.childrensoncologygroup.org/. 7. Gao X, Fisher SG, Mohideen N, et al: Second primary cancers in patients with laryngeal cancer: A population based study. Int J Radiat Oncol Biol Phys 56(2):427–435, 2003. 8. Baxter NN, Tepper JE, Durham SB, et al: Increased risk of rectal cancer after prostate radiation: A population based study. Gastroenterology 128(4):819–824, 2005. 9. Eisen GM, Sandler RS: Are women with breast cancer more likely to develop colorectal cancer? Critical review and meta-analysis. J Clin Gastroenterol 19(1):57–63, 1994. 10. Gritz ER, Demark-Wahnefried W: Health behaviors influence cancer survival. J Clin Oncol 27(12):1930–1933, 2009. 11. Demark-Wahnefried W, Rock CL, Patrick K, et al: Lifestyle interventions to reduce cancer risk and improve outcomes. Am Fam Phys 77(11):1573–1578, 2008. 12. Ganz PA: A teachable moment for oncologists: Cancer survivors, 10 million strong and growing! J Clin Oncol 23(24):5458–5460, 2005. 13. Miedeme B, MacDonald I, Tatemichi S: Cancer follow-up care. Patient’s perspectives. Can Fam Phys 49:890–895, 2003. 14. Ganz PA, Casillas J, Hahn E: Ensuring quality care for cancer survivors: Implementing the survivorship care plan. Semin Oncol Nurs 24(3):208–217, 2008. 15. American Society of Clinical Oncology Clinical Practice Guidelines. Available at: http://www.asco.org/ASCO/Quality+Care+%26+Guidelines/Practice+Guidelines. 16. Haylock PJ, Mitchell SA, Cox T, et al: The cancer survivor’s prescription for living. Am J Nurs 107(4):58-70, 2007. 17. The Prescription for Living Plan. Available at: http://www.nursingcenter.com/library/static.asp?pageid=721732. 18. National Comprehensive Cancer Network colon cancer guidelines. Available at: http://www.nccn.org/professionals/physician_gls/PDF/colon.pdf. 19. Memorial Sloan-Kettering Cancer Center screening guidelines. Available at: http://www.mskcc.org/mskcc/html/65279.cfm.

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