Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Survivorship care plans lag more than a decade after launch.
Of all the people who would know about the long-term and late effects of cancer treatment, Susie Leigh, a three-time cancer survivor and a registered nurse, would be at the top of the list. Leigh, who served as a lieutenant in the United States Army, completed a tour of duty in Vietnam and returned home in 1971. Shortly after, she was diagnosed with Hodgkin lymphoma and treated with chemotherapy and radiation, and then went into remission.
Leigh’s cancer experience influenced her decision to become an oncology nurse. Understanding firsthand the needs of survivors, in 1986 she became one of the founders of the National Coalition for Cancer Survivorship (NCCS), a nonprofit organization focused on advocating for quality cancer care for all people touched by the disease. NCCS defines someone as a cancer survivor from the time of diagnosis and for the balance of life.
In 1990, Leigh faced a second cancer diagnosis. This time it was breast cancer, a not-uncommon result of the kind of radiation she had received in the past — previous studies have found that patients treated for Hodgkin lymphoma are at increased risk of developing more than a dozen second cancers, including breast cancer, according to the American Cancer Society (ACS).
Leigh underwent a bilateral mastectomy. Five years later, she was diagnosed with early-stage bladder cancer and treated successfully.
Knowing that she was at risk for heart problems as a result of her cancer treatment, Leigh asked for a cardiology work-up in 2010 at the local Veterans Administration where she was treated. At first, her request was turned down by the nurse practitioner, but the cardiologist pushed it through and didn’t find anything amiss. “The cardiologist completely missed the boat,” Leigh says.
Just three years later, she began having trouble breathing, so Leigh made an appointment with the same cardiologist. She was triaged to see the nurse practitioner, who put an oximeter on her finger and saw her oxygen levels were going down after minimal exertion. She ordered an immediate echocardiogram, which showed Leigh had congestive heart failure. She was a walking heart attack.
Leigh is one of the more than 15.5 million cancer survivors alive today because of increased early detection and better treatments. That number is expected to rise to more than 20 million by 2026, according to a report by the ACS and National Cancer Institute (NCI).
However, many survivors face potentially devastating long-term and late physical effects, such as infertility, secondary cancers, lymphedema (swelling of areas adjacent to the removal of lymph nodes), heart issues and neuropathy (weakness, numbness and pain from nerve damage, usually in the hands or feet). Survivors are also susceptible to psychosocial and emotional concerns including anxiety, depression, distress and fear. One study that included researchers from Dana-Farber Cancer Institute in Boston found that 1 in 5 individuals diagnosed with cancer suffer from post-traumatic stress disorder. The physical, psychosocial and emotional factors can all play a part in quality of life during and after cancer.
In 2005, the National Research Council and Institutes of Medicine published “From Cancer Patient to Cancer Survivor: Lost in Transition,” the first comprehensive document on cancer survivorship, which included 10 recommendations. First, it called for health care providers and patient advocates to recognize survivorship as its own, distinct phase of cancer care. The second recommendation advised that a survivorship care plan (SCP) be provided for all patients. The SCP, which is to be completed by a member of the oncology team, should list cancer type, treatments received and the potential consequences and recommended follow-up; discuss preventive practices and how to maintain health and well-being; provide information on legal protections for employment and health insurance; and list the availability of psychosocial services in a patient’s community.
The SCP was designed for the patient to take to their primary care physician for follow-up for the rest of their life. Ironically, Leigh became an expert on SCPs, consulting on survivorship programs developing at cancer centers across the country.
She was on the review committee for “From Cancer Patient to Cancer Survivor: Lost in Transition,” but the lack of information became personal when she faced her own late effect. Following the book’s publication, oncologists and cancer centers began exploring how to fulfill the recommendations, which also included developing concise evidence-based tools, testing models at designated hospitals and cancer centers, supporting Congress in creating legislation to support survivorship, providing training to health care providers, encouraging those affiliated with employment to minimize side effects, improving access to health insurance and expanding research dollars and opportunities.
Studies began that tried to identify the best plan and implementation of SCPs, which Danielle Blanch Hartigan, Ph.D., M.P.H., says is one of the key impediments. “You can mandate that the survivorship care plan is created and you can urge people, organizations, hospitals and health care systems to advocate for patients,” Hartigan says. “But in reality, creating and using them is a lot of work. The real tricky part is how to do it well.”
Hartigan, an assistant professor at Bentley University in Waltham, Massachusetts, worked at the NCI, where she focused on patient-physician communication. She and colleagues conducted a study, which was published in 2015 in Patient Education & Counseling, that found despite the additional recommendations from accrediting organizations, fewer than half had implemented SCPs for patients.
Other studies find that most survivors report not receiving a treatment summary. In a study published in The Oncologist in 2016, 441 cancer survivors from 12 cancer centers were surveyed. Researchers found that just 40 percent had received a written treatment summary and only 35 percent had received a follow-up care plan. Then there are other studies that show SCPs don’t make a significant difference for survivors. For instance, a study by Imran et al. presented during the 2018 American Society of Clinical Oncology (ASCO) Cancer Survivorship Symposium compared survivors who had been given an SCP with those who hadn’t. Researchers found that they scored similarly or less favorably in most aspects with the distribution of the SCP. However, they were better able to identify signs and symptoms of disease recurrence and potential side effects of treatment.
“To make the SCP really effective, you can’t throw a piece of paper at somebody,” Hartigan says. “You’re going to want to implement them in a way that involves a lot of patient engagement in a really patient-centered way so they can understand what’s even written on these documents.”
This approach, she says, empowers patients to have better conversations with not only their oncology team but also their primary care physicians and the specialists they might see for late effects.
Although most studies focus on oncologist-patient communication, the discussion a patient has with their primary care or specialty physicians is also critical. In 2014, Hartigan led a study, published in the Journal of Clinical Oncology, that represented a national sample of oncologists and primary care providers. “We showed a minority of both primary care physicians and oncologists discussing and providing SCPs to their patients,” Hartigan says. “Implementing survivorship care planning, having dedicated survivorship clinics or dedicating oncology resources in a clinic to survivorship care takes time and resources.”
Leigh has seen both sides of the issue. As a nurse working alongside patients with cancer since 1976 and a survivor herself, she has been active in the survivorship movement.
She helped start a support group at Arizona Oncology, one of the largest medical groups in the state, and found that the patients loved it, at first. They even created their own network through social media. However, the support group focused on the psychosocial effects, not the physical, which the patients told her they didn’t like.
“They don’t want to hear all the stuff that might happen, especially when they’re just finishing up therapy,” Leigh says. “That means we aren’t communicating properly. The conversation needs to be a major part of our conversation through the entire experience instead of getting them through treatment, celebrating that they finished and then dropping this bombshell on them that they might have some problem down the road.”
Across the country, some cancer centers have created their own approaches. In Newport Beach, California, Hoag Cancer Center developed what it calls a new paradigm for treatment by including care from diagnosis through survivorship in the same building.
Dori Holnagel, MBA, vice president of Clinical Institutes, explains that a navigator assigned at diagnosis stays with the patient through treatment and into survivorship, using electronic medical records to document the movement.
“The navigators are assigned by tumor type,” Holnagel says. “The individual patients they see depend on the complexity of the disease, the patients’ needs and the oncologists’ direction.”
Navigators provide SCPs using Journey Forward, which provides adaptable cancer-care planning tools for health care professionals and patients. Developed in 2008 — a direct result of the recommendations from “From Cancer Patient to Cancer Survivor: Lost in Transition” — it can help patients find their way to live their best “new normal,” Holnagel explains.
A multidisciplinary team, led by the navigator, examines each case weekly throughout the treatment and post-acute treatment period. The team can be made up of oncologists, surgeons, radiation oncologists, dietitians, social workers, speech pathologists and lymphedema therapists. As patients move into survivorship, Hoag Cancer Center offers myriad programs designed to provide patients with information and tools including forms of exercise, such as restorative yoga; fatigue management; image optimization; and tumor specific support groups. “If we have a patient who wants to learn about something, we find a way to provide a class or workshop on that issue,” Holnagel says. Specifically, workshops and education around the medical aspects of survivorship have been slower to develop than those for the psychosocial issues, she says. This is mostly because each of the tumor sites has vastly different issues requiring the development of medically driven solutions.
“As far as working with the primary care physicians, we are still working on that,” she admits. “When you are looking at something that may happen in 15 years, it’s the primary care physician that needs to know what to watch for.”
And Leigh agrees. “It is really, really imperative that we get the primary care doctors on board,” she says. Leigh feels survivorship education can be offered by nurse practitioners, since doctors are not getting the training in either late effects or the wellness portion that will keep patients healthy and less likely to suffer these side effects.
Coverage and reimbursement services for long-term survivorship care depend on the facility, according to ASCO, which states the following: Currently, there are no established billing codes categorized specifically for survivorship care; follow-up visits are routinely covered by payers, but not all survivorship providers can bill in all states; and oncologists may be able to bill for the total time spent examining and/or counseling the patient. Further, though regulations vary by state, services delivered by advanced-practice providers may also be reportable and reimbursable. To improve quality of care after diagnosis for all patients with cancer and survivors, NCCS has reintroduced legislation. The Planning Actively for Cancer Treatment, or PACT, Act would provide Medicare beneficiaries with survivorship care plans.
Another consideration, according to NCCS CEO Shelley Fuld Nasso, is new payment models; the current ones do not have a survivorship component.
“I know that ASCO has contemplated a survivorship payment model, and we’re thinking about how we can try to move that conversation along because the concern is that there isn’t the incentive necessarily to follow the patient long-term,” Fuld Nasso says.