“Across the country there are areas and pockets that have done it very well and there are areas that struggle due to limited human resources, IT system issues, and the time required to try to find the best structure to deliver survivorship care plans,” explains Gosselin.

“I would love to say there’s great evidence that SCPs work, improve care, result in greater quality of life, but we just don’t have those data,” adds Alfano. “Here’s why: the implementation of survivorship care planning is really variable. It’s been slow and really variable. As different types of health systems have tried to roll them out, they’ve encountered problems.”

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Integration of different electronic health records databases has been one important problem, Mayer and Gosselin agree. Those problems include electronic health records databases that are unable to share data, Alfano says. “Radiation oncology’s database might not talk to clinical oncology, or surgery, or other service systems like rehabilitation or psychological care—so pulling in all of these pieces of information is not happening on a very wide basis right now, and that’s been challenging.”

Electronic planning documents are needed that can pull data from required fields in different databases to auto-populate a template, rather than requiring that data be entered manually, Gosselin says. Some departments still rely partly on paper records, further complicating survivorship care planning, she adds.

Nor are reimbursement mechanisms yet in place. “There is no payment for survivorship treatment planning, but hopefully that is going to change,” Alfano notes.

The need for more research is urgent. A tsunami of cancer survivors is coming, Alfano warns. “Our baby boomers are aging, and more of them are getting cancer; we’re going to see a 42% rise in the number of older adult cancer survivors within a decade. There aren’t going to be enough oncologists to follow people long-term, and primary care is going to have to take on implementation of SCPs.”


“Let’s be honest: in many cases it’s going to be the oncology nurses, or a physician assistant, or social worker who will generate the SCP and have the planning conversations with patients, and they will be linking with nurses on the primary care side,” Alfano says. “They have a huge role in ensuring that the patient who is transitioning out of oncology gets all of the care they need.”

That will involve comprehensive care, Alfano emphasizes, “not just screening for second cancers or surveillance for recurrence, but also the emotional and psychosocial referrals, screening for physical impairment and referring to rehabilitation or symptom management care, and referrals to programs that help survivors change unhealthy behaviors. Nurses are integral to providing that comprehensive care.”

Take patients with balance problems. “Many are not getting referrals to physical therapy,” Alfano notes. “These things are fixable, treatable—but patients just don’t know that.”

Survivorship care planning is not just about handing a summary to patients and their primary care providers. “It has to be more than that,” Alfano emphasizes. Patient education—making sure the patient really understands what late effects to look out for—is key. “It has to involve ongoing communication with the patient about care. You can’t just hand somebody a list of recommendations because adherence is likely to be low. Instead, there needs to be an ongoing process of working with the patient to identify the goals of survivorship care.”