Meeting the Needs of Survivors

When former president Richard Nixon signed the National Cancer Act in 1971, survivorship care was not even a topic of discussion due to extensive inpatient care and high mortality rates from the disease.

Though with today’s approximately 14.5 million cancer survivors—a number projected to reach nearly 19 million in 2024—new survivorship models of care are needed.

"Basically, everybody is a cancer survivor one way or another," says Deborah K. Mayer, PhD, RN, AOCN, FAAN, during her presentation, "Survivorship Care: Moving Beyond Being Lost in Transition," at the 2015 Annual ONS Congress.

Mayer is professor at the University of North Carolina-Chapel Hill School of Nursing and director of cancer survivorship at the University of North Carolina and UNC Lineberger Comprehensive Cancer Center.

“That’s OK in the big umbrella sense of the term, but it’s not really helpful when you’re thinking how to develop programs and resources. The person with cancer may consider themselves a survivor. Family members and friends can be a survivor… Basically, anybody who has been impacted by all of this can be a survivor.”

However, there are different types of survivors, Mayer explained—those with early-stage or metastatic disease, treatment complications, and/or disease recurrence—meaning there is no one-size-fits-all definition. However, the emphasis is for survivorship care plans be developed for people ending their cancer treatment with no evidence of disease (curative intent)..

Estimates of the number of cancer survivors by age group in the United States as of January 1, 2014 are: 0-19 (1 percent); 20-39 (4 percent); 40-64 (35 percent), and >65 (60 percent).¹

“This (40-64) group is of working adults who are still dealing with having families, trying to work and accrue benefits for retirement, etc.,” Mayer says. “They are faced with financial burden issues that are different from and significantly more so than people who have already retired."

Unmet Needs of Survivors

Reports such as the Institute of Medicine’s (IOM) From Cancer Patient to Cancer Survivor: Lost in Transition and the NCI’s Cancer Control Continuum have suggested survivorship care models, but more work needs to be done to better address survivors’ unmet needs, Mayer says.

Essential components of survivorship care plans, according to the IOM report, include prevention of recurrence, metastases, and/or development of new cancers, management and prevention of possible late effects, intervention for treatment-experienced consequences, and coordination of care from providers.

For psychological and social issues, plans include assessment of psychosocial effects, connecting patients with appropriate services, and supporting patients in managing their illnesses, and providing follow-up assessment to monitor and evaluate outcomes and make appropriate alterations in care plans as necessary.

There are many unmet needs beyond cancer treatment, Mayer says, and fatigue, depression, sleep problems, and pain are effects with the greatest impact on survivor quality of life.

“In the old days, we would ‘treat them and street them,’” Mayer explained. “Your treatment is over and you would go home. That is when people felt really abandoned or their depression and anxiety (would kick in) and it’s like, ‘now what?’”

Mayer cited additional unmet needs in survivors, including struggles with sexuality; stress; the impact of the disease on their partner; understanding possible longer term side effects from their treatment; and coping with fears of disease recurrence.

Compared with those without a history of cancer or other chronic diseases, survivors were significantly more likely to report being in fair or poor health, have a psychological disability; limitations in activities of daily living; functional limitations; and for those under the age of 65, being unable to work because of a health condition.²

The likelihood of poor health and disability was much higher among cancer survivors who also reported comorbid chronic conditions, such as obesity, diabetes, dyslipidemia, hypertension, osteoporosis/osteopenia, hypothyroidism, depression, cognitive changes, and age-related changes, Mayer reported from this study.

These are effects—even reported in survivors 10 years posttreatment—nurses should check for in patients as part of an institution’s survivorship care plan, Mayer explained.

“Many of us are not even seeing these (10-year) patients in oncology anymore,” Mayer says. “Who is answering these questions? Who is doing these assessments? We are still missing the mark on some of these long-term survivors and need to partner with primary care providers to make sure they get addressed.”

Bridging the Gap

Because the rising number of survivors are either following up with their oncology specialist or their primary care provider, and rarely both, Mayer says, communication between the two providers is lost in the shuffle. She encouraged the shared care model, although there isn't strong evidence for any one model of survivorship care. However, patients who receive sahred care receive better care compared with when care is solely given by their oncologist or their primary care provider, Mayder added.

“Your primary care provider should be involved all along the way,” Mayer says. “Do we let our primary care providers know we are going to put the patient on a medication that may increase (their) blood pressure, and they already have hypertension? (Do we tell them) that we are putting them on steroids when they are diabetic? How do we work with them, so that they work with us, to help manage those issues during active treatment, and how do we carry that through when treatment is over?”

Mayer says that often “primary care providers are left out of the loop, and they’re not happy about that. We have to think about survivorship care from the time of diagnosis on, so we’re not creating gaps that the survivorship care plan was developed to close.”

Where Are We Headed?

The American Society of Clinical Oncology created a new template for survivorship care plans in October 2014,³ designed for healthcare professionals to use when providing a survivorship care plan to patients who have completed curative cancer therapy. The plan contains information regarding the patients’ treatment, their need for future checkups and tests, potential long-term late effects of their treatment, and ways survivors can improve their health.

While survivor education, assessment, and intervention may improve their quality of life, there are not yet enough long-term data to support this, Mayer explained. Additional research is needed to provide the evidence for other useful components of survivorship care plans.

“We won’t be able to anticipate all of this until we fund and conduct better longitudinal studies, which take up a lot of time and cost a lot of money,” Mayer says, adding that the NCI is currently funding cohort studies.

“If we had started that about five years ago, we would have answers today for many of the things we are wondering about. If we don’t start them today, we’re going to be saying the same things five and 10 years from now.”

Mayer suggested nurses write down the diagnosis and treatment plan for patients upfront, and create a survivorship plan later as a bookend—all the while personally or electronically sharing this with the patients’ primary care providers.

“I personally think this is something oncology nurses and oncology nurse practitioners could own,” Mayer says. “We could step up to the plate and say ‘we are going to make this our business.’”

She also says nurses should be involved with health services research, as well as examine various models of care and care delivery systems.

“(It’s not about) just giving patients a piece of paper to meet the standard, but making sure patients understand their surveillance plan, risk for long-term or late effects, and health promotion strategies that may minimize some of the complications they have,” Mayer says.

Additional resources for nurses to use and gather ideas for survivorship care plans Mayer mentioned include the LIVESTRONG Essential Elements of Survivorship Care: Definitions and Recommendations; the NCCN Guidelines for Survivorship; CancerCare.org, The University of Texas MD Anderson Cancer Center’s survivorship page, and Journey Forward, among others.

“As we know, living with cancer takes guts and that’s if everything goes well,” Mayer concluded. “I think we can do better to make it a little bit easier for people to deal with what they’re facing, and not making it worse by the way that we communicate or don’t coordinate care.

“We really need to think of survivorship along the continuum from the time of diagnosis on.”

References

1. American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2014-2015. http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-042801.pdf. Accessed April 28, 2015.

2. Hewitt et al. Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci. 2003;58(1):82-91.

3.Mayer DK, Nekhlyudov L, Snyder CF, et al. American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract. 2014;10(6):345-351.