With more than 15.5 million Americans living beyond cancer, it’s no surprise that more attention is being paid to survivorship than ever before. Once treatment ends, patients can be thrown back into a world after cancer with little or no attention paid to their concerns about recurrence, late effects from treatment, how to follow up with their future care, and a great many more unknowns.

Treatment summaries and survivorship care plans are becoming essential components to ensure quality, individualized care for patients during and after their cancer treatment. In fact, the American College of Surgeons (ACOS) Commission on Cancer (CoC) designated the implementation of survivorship care plans as part of its Cancer Program Standards for the accreditation of cancer programs throughout the country. Recognizing the need to support patients as they live with, through, and beyond cancer is just another facet of providing quality oncology care.

The Need for Survivorship Care Plans

Beyond meeting the accreditation standards for an institution, survivorship care plans offer essential, valuable information to patients as they progress through their cancer treatments. ONS member Darcy Burbage, RN, MSN, AOCN®, CBCN, survivorship nurse navigator at Helen F. Graham Cancer Center and Research Institute at Christiana Care Health System in Newark, DE, sees the need for survivorship care plans in her practice.

“The survivorship treatment summary and care plan provides our patients with a living document of the care they’ve received, and it includes written instructions for follow-up care,” Burbage says. “Beyond that, we provide survivors with information on the potential long-term and late effects of treatment, evidenced-based management strategies, and the important symptoms to report to their treatment team. Survivorship care plans also inform the patients of the physical effects of treatment and provide them with resources to address the psychosocial effects of a cancer diagnosis.”

According to ONS member Leslie Heron, RN, MN, APRN, FNP-BC, NC-BC, nurse practitioner at the Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance in Seattle, WA, survivorship care plans are more than just documents. They can offer patients a sense of relief and validation.

“The goal is to provide an advocacy document for patients and a roadmap for their providers after cancer treatment,” Heron says. “For many patients, it’s a gift having one, easy-to-read and easy-to-follow list of what to do, when to do it, and who to ask when you need help. One of the hidden benefits for patients who have survivorship care plans is being told that their side effects are totally normal. Almost all of my patients are so relieved when I tell them I’d be surprised if they weren’t fatigued, having problems sleeping, experiencing fear of recurrence, or struggling with moving forward after treatment. The validation of their feelings and having a plan for how to deal with them is an invaluable part of the visit.”

Providing patients with the navigation and foresight to answer the question, “What’s next?” can alleviate fears and allow patients to focus on taking the necessary steps toward a life after cancer—helping them address required follow-up care, manage late effects, and recognize important symptoms to address.

Incorporating Survivorship Plans Into Practice

According to the ACOS CoC Cancer Program Standards, survivorship care plans have started to roll out in institutions throughout the country. With the introduction of Survivorship Standard 3.3 in 2013, the implementation of care plans into practice was aimed to steadily grow over a five-year period.

By December 31, 2016, the CoC required institutions to offer survivorship care plans to 25% of eligible patients to maintain their accreditation. By the end of 2017, that number will climb to 50% of those eligible, and, by the end of 2018, survivorship care plans should be offered to at least 75% of eligible patients. (See sidebar for eligibility criteria.) Supporting survivorship care plans for patients is quickly changing in practices everywhere.

“The survivorship care plan includes specific known or potential risks from treatment, such as the risk for cardiomyopathy from anthracycline exposure or loss of bone density related to steroid exposure,” Heron says. “It also includes what a survivor can do to prevent or lessen the likelihood of that outcome, such as cardio protection with aerobic exercise and a heart healthy diet or resistance exercise, calcium, and vitamin D for healthy bones. The care plan should address testing and surveillance recommendations as well as how often those need to take place, who should be ordering and/or monitoring the results, and what to do with the findings.”

Burbage notes the role of all oncology nurses when implementing survivorship care plans throughout practice. “Nurses are an integral part of the multidisciplinary team and, as such, survivorship education should be implemented as routinely as pre-op, chemotherapy, and radiation therapy teaching,” she says. “A written survivorship care plan is just one component of survivorship care. The conversation surrounding potential physical and psychosocial long-term and late effects should be ongoing and tailored to the individual survivor.”

Challenges Facing Adoption

The introduction of new procedures can be a difficult task in any care environment. According to Burbage, the implementation process for survivorship care plans requires effort, organization, coordination with existing technologies and team members, and—most importantly—time.

“In my practice, time’s the biggest challenge in the implementation process,” Burbage says. “In the absence of an electronic system that interfaces with all the treating providers’ electronic health records, oncology nurses are gathering data from multiple systems and manually entering that information into the survivorship template that their cancer center uses. Also, the annual increasing percentage requirements of the CoC creates an additional challenge for many cancer centers.”

Heron also notes issues with adopting survivorship care plans on a wider scale. “Lack of institutional buy is a big problem,” she says. “Having one survivorship provider, which is what most institutions have, who is expected to be the one to compile data into the care plan, stay on top of the research on late effects of all agents used for cancer treatment (old and new), present the document to the patient, and promote and market the benefits of the survivorship care plan across the institution is unsustainable. Until our institutions commit to full staffing and financial support of survivorship programs, it is unlikely we will be able to fully and consistently meet the CoC mandate.”

Heron recognizes the need for specialized education for staff members working with survivorship. “There is the idea that delivering a plan of care focused on optimal wellness for the remainder of the life of a cancer survivor is a task that can be assigned to anyone on the care team,” she says. “Survivorship needs to be recognized as a subspecialty in a new and expanding field of knowledge. When looking at the ability to reimburse for services, advanced practice nurses are ideally positioned to educate our patients on survivorship and can bill for their time, but they are often also covering on-treatment patients in a busy practice. Survivorship care, and delivering the care plan information to the patient in a meaningful way, is a unique subspecialty of oncology, no matter who on the team delivers that care.”

Heron and Burbage both cite a need for general awareness and education for survivorship care plans, for patients as well as providers. Beyond that, further research is needed to uncover gaps in knowledge surrounding the efficacy of survivorship care plans and the most efficient, timely way to deliver them to patients.

Leslie Herron
Leslie Heron, RN, MN, APRN, FNP-BC, NC-BC

The Future of Survivorship Care

“As the number of cancer survivors continues to increase, ongoing evaluation of the long-term and late effects of cancer treatment will continue to be an important role of oncology nurses,” Burbage says. “Survivorship care plans are one way that oncology nurses can help survivors begin to develop health-related quality-of-life goals and to define their new normal. Empowering survivors to engage in self-care and wellness activities, such as eating a healthy diet, regular exercise, and other mind-body programs, is essential to improving the overall health and wellbeing of survivors. It could also help to reduce the risk of cancer recurrence in the future.”

Supporting survivorship efforts in your institution could be as simple as starting the conversation among your colleagues. Engage with staff who are consistently working with survivorship and learn what you can do too.

“It’s like we tell our patients, ‘Don’t suffer alone.’ Look for continuing education in the field of cancer survivorship; seek out your colleagues who are already doing this work and ask for help, guidance, and support; and advocate for working as part of a team,” Heron says. “Having peers in this very new area of patient care to bounce information and ideas off of is imperative, and it will help you provide the best care to your patients.”

comments

Posted by Carolyn Vachani (not verified) 6 months 3 weeks ago

I'd like to suggest a correction. The LIVESTRONG care plan was replaced last year by OncoLife, a tool on the OncoLink website. You can find the tool at www.oncolife.org
Thank you

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Posted by Suzan Page, BS… (not verified) 6 months 3 weeks ago

It was interesting to read what I've always seen as a huge need. I would like to see survivorship care plans to include some sort of information network for providers to link patients with providers with specific interventions to aid in returning to some form of optimum normalcy. The body has an amazing ability to heal if the client knows how to go about doing that. For example, breast cancer patients who have disfiguring surgery could be referred to a laser specialist for scar reduction or a health care specialist who offers areolar tattoo augmentation at a reasonable cost, or a wellness PT trainer, aftercare counseling or health and beauty advisor with evidence based knowledge.

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Posted by Emily Jo Rajotte (not verified) 6 months 2 weeks ago

Great article!
We are offering a conference in October geared towards educating providers on the needs of cancer survivors: www.fredhutch.org/2017-symposium

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Posted by Alene Nitzky (not verified) 6 months 1 week ago

and teach physicians to do the same. In the absence of resources provided in institutions, remember there are community providers of complementary services, and nurse entrepreneur opportunities in survivorship, but referrals are needed from the healthcare providers in order to make this work. One example is www.cancerharbors.org We need to fundamentally change our approach to survivorship- making treatment all-inclusive of following up with patients- not just on scans and follow up visits after medical treatment is done, but on true healing and recovery. We need to clean up the mess we make!!!

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