More patients are surviving long after their cancer diagnoses, putting a new emphasis on survivorship care planning, explained Deborah A. Boyle, MSN, RN, AOCNS, FAAN.
Boyle, who is the editor in chief of Oncology Nursing News, discussed survivorship care planning during the CURE Patient-Focused Sessions at the 36th Annual Miami Breast Cancer Conference.
“We as health providers have our own concerns. How do we not lose patients through the cracks and be lost to follow-up and come back with a recurrence that we might have caught earlier if we were keeping better tabs on them,” she said.
These are all relatively new concerns in the field of oncology, according to Boyle, who mentioned that the outlook for cancer – and breast cancer in particular – was vastly different when she first started her nursing career decades ago.
“We really didn’t have a big focus on survivorship at that time because unfortunately there was a large cadre of women who did not survive,” she said. “We didn’t have a lot of tricks in our bag as far as managing breast cancer and look at potential cure rates for our patients. Now it’s definitely very changed.”
While outcomes across all cancer types continue to improve, there are common late- and long-term effects that cancer survivors experience for years after they finish active treatment, such as stigma, feelings of isolation or abandonment, recurrence anxiety, and persisting symptoms.
These are all concerns that an oncology nurse may handle when the patient is in active treatment. However, after treatment, patients see their oncology team – comprised of dedicated nurses, physicians, and others professionals who know the ins and outs of cancer – far less frequently. Instead, they usually transfer care back to their primary care physicians.
“The primary care physicians who may be following you after your active cancer therapy may feel that they’re not really equipped to know what to look for,” Boyle said, mentioning that the oncology staff may not have the resources to follow up with all their patients.
Survivorship care plans, though not mandatory in all cancer centers across the United States, are becoming more popular to help patients manage life after cancer treatment and ensure that they don’t, “slip through the cracks,” explained Boyle.
Boyle highlighted two different types of survivorship care plans. The American Society of Clinical Oncology’s (ASCO) plan is a brief listing of a patient’s cancer history, along with the treatment and procedures they received, as well as any ongoing or persistent symptoms and genetic cancer information, if applicable.
“It’s a listing. It’s not meant to be a medical record or give you the Bible of what happened to you. It’s a brief summary that you can keep that you can give to whoever is providing your survivorship care or if you have to go to another specialist for whatever reason,” Boyle said.
The second type of survivorship care plan discussed was from the Oncology Nursing Society (ONS), which is a bit more detailed, and includes what health care providers recommend for follow-up care and treatment. The ONS plan also provides wellness and diet and exercise recommendations for many patients.
“I can’t remember one person at the end of their treatment who has not said to me, ‘Well, what can I do to ensure I stay well and ensure good outcomes long-term?’” Boyle said, noting that she predicts more “prescriptions for wellness” as researchers and providers better understand the effects of obesity and diet on cancer outcomes.
According to Boyle, the perfect survivorship care plan would include aspects from both the ASCO and ONS care plans. However, there are still barriers and unanswered questions when it comes to survivorship care plans, from questioning who is responsible for creating and paying for them, to their actual effectiveness.
“There’s a lot of debate about these care plans, because people are asking, ‘Do they make a difference?’” Boyle said. “We don’t have that data yet to say that there are definitive benefits with these survivorship care plans.”
However, the plans are a good start, Boyle said. “There needs to be a communication tool for all stakeholders involved with cancer survivorship,” she added. “That includes us as health care providers, that looks at you the patients, and that looks at primary care physicians who are usually caring for cancer survivors.”