By Tammy McCausland
This blog post is based on “Survivorship Care,” an article published in Radiation Oncology News for Administrators, Vol 30, No 4. The publication is an SROA member benefit.
Given the growing number of survivors––22.1 million survivors of cancer by 2030 according to American Cancer Society estimates––specific services will be needed to deal with long-term side effects and tools to help them maintain their quality of life. The call for a survivorship care plan for each patient started the Institute of Medicine’s (IOM) 2006 report, From Cancer Patient to Survivor: Lost in Transition. Since then, the National Comprehensive Cancer Network (NCCN), the American College of Surgeons Commission on Care, the National Academy of Medicine (formerly IOM) and other organizations have issued guidelines about survivorship care.
In June 2020, Wake Forest Baptist Health Cancer Survivorship Clinic celebrated its 500th patient and first anniversary. Dr. Stacy Wentworth, director of Survivorship, said, “I wanted to give healthcare providers a survivorship curriculum and also provide a [dedicated] space for patients to better process survivorship as they move from illness to wellness.”
The Cancer Survivorship Clinic uses a blended model where someone from the patient’s original treatment team comes to see them in a different space. Adult survivors of pediatric cancers from Brenner Children’s Hospital and other cancer survivors—including lung, leukemia, lymphoma, multiple myeloma, rectal, colon and breast—receive services. Wake Forest Baptist Health also has a breast survivorship clinic at their Clemmons location, and they’ve started nurse-based survivorship at High Point Cancer Center.
Each disease group decides when and how they refer to survivorship. The disease team meets with the survivorship clinic manager as well as the Beacon and Epic support staff to develop a workflow and a referral to the Cancer Survivorship Clinic at a specified time. “We’ve allowed it to be a model where the disease groups can hold onto patients they feel are at very high risk for recurrence because they need to be closer to their treatment teams, whereas patients who are at a lower risk for recurrence are sent more quickly,” said Dr. Wentworth.
She also explained, “We felt it was important to address all of our survivors, so we see all our different groups in the same clinic. I think that there can be a hub-and-spoke model, but having space in a large, comprehensive cancer center dedicated to survivorship was really a statement by the institution that says, ‘We’re prioritizing survivorship.’”
Most of the Cancer Suvivorship clinic’s providers are nurse practitioners. “Nurses are so well trained to be listeners, to look for symptoms and barriers in patients. They are a tremendous asset and well suited to care for survivors,” said Dr. Wentworth.
They use several tools to evaluate survivor concerns, including the PROMIS survey, a specific metric for measuring patients’ needs. Two weeks before their clinic appointment, each patient receives PROMIS, as well as a distress thermometer and another needs assessment in their MyWakeHealth patient portal. Patients complete the needs assessment at home, and then the provider reviews it before creating the patient’s care plan, which they will discuss mutually in the clinic. Dr. Wentworth said their process “allows the patient to drive the discussion, rather than the provider guessing what they think the patient probably wants to discuss.”
Each patient’s first visit in survivorship is always a one-hour visit, regardless of how far they’re out from treatment. Every subsequent visit lasts 30 minutes. “Every time patients come back, they receive that same survey to drive more conversations,” said Dr. Wentworth. Patients receive a care plan and are connected to the resources they need.
They’re working on having auto-referrals in Epic based on the responses to the PROMIS survey and patients’ T scores. For example, if patients report relationship problems, they might be referred to counselling or social work; if they’re having physical symptoms, they might be referred to physical therapy, pelvic floor therapy or pulmonary rehabilitation. Dr. Wentworth said, “We’re really trying to drill down on that and use our IT infrastructure to address patient-reported concerns, rather than a provider having to remember, ‘Oh, yeah. They did mention to me that they were having shortness of breath while walking. I should remember to refer to pulmonary rehab.’”
The lack of reimbursement for survivorship-specific care is a significant challenge. “All oncologists provide survivorship care. The hard part is oncologists’ time is reimbursed not for talking but for prescribing or operating,” she said. “Cancer centers are not financially motivated towards providing survivorship care by physicians, and so I think that as healthcare costs continue to rise, figuring out a better way to do that and to still provide the care that patients demand and deserve is really important.”
“We did it with amazing infrastructure support, and we did it with a lot of cross-departmental talk. With survivorship, there are so many shareholders. It really took a lot of meetings, time and coordination,” she said. “We really wanted to emphasize that we were supporting survivors, that it was a comprehensive cancer center focus, and also to provide reassurance to patients about the continuity of the care team. In the midst of the pandemic, I felt like having this very concrete example of something we accomplished as a health system is really positive.”
In the early months of the pandemic, some patients had video visits and rural patients had phone visits. Beginning in July 2020, many patients returned for in-person appointments. “We hoped that maybe some telehealth would be a good option for us, but so many of our cancer patients want to be seen in person. Telehealth is more available to us than maybe we thought it would be, but our patients just aren’t opting for that a lot,” she said.
The Cancer Survivorship Clinic is stable and growing. More providers are referring their patients to the clinic. They received a grant from Team Cancer America, a national organization
that supports adolescent and young adults with cancer, an underserved and high-needs population. Dr. Wentworth said, “We look forward to opening up with our colleagues in Brenner’s a joint survivorship program for those high-needs adolescent and young adult patients in the next year, as well as to serving additional cancer populations.”
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