The Mayo Clinic thyroid cancer survivorship program

Dec. 15, 2018

Management of patients with thyroid cancer does not end when the medical signs of disease have disappeared. Physical, psychological and day-to-day adjustments have to be made by many patients, similar to adjustments made by other cancer survivors. Therefore, Mayo Clinic has created the thyroid cancer survivorship program. The program is designed for patients with well-differentiated thyroid cancer who have completed curative-intent treatment. Eligible patients are seen in a nurse practitioner-led survivorship clinic.

Michele M. Merten, APRN, C.N.P., D.N.P., with Endocrinology, Diabetes, Metabolism, and Nutrition at Mayo Clinic's campus in Rochester, Minnesota, says: "We founded our thyroid cancer survivorship program in April 2017 in response to two publications: the 2006 report From Cancer Patient to Cancer Survivor: Lost in Transition; and the 2015 publication Cancer Program Standards: Ensuring Patient-Centered Care.

"As part of the survivorship visit, patients receive a survivorship care plan (SCP), which is an individualized plan summarizing the patient's treatment (such as surgery, radioactive iodine or percutaneous ethanol injection), cancer staging, thyroid hormone replacement goals, potential short- and long-term side effects from treatment, and an outline regarding expected future follow-up. The SCP also documents the care team, which includes the patient's primary care provider, surgeon, endocrinologist and endocrine nurse practitioner.

"Health promotion is reviewed with the patient in regard to limiting alcohol use, abstaining from tobacco, being physically active and aiming for a healthy weight. Resources for achieving these goals are also discussed and reviewed with patients, and may include the Mayo Clinic Cancer Education Center, the YMCA Livestrong Program, and information on the American Cancer Society, which can help offset costs incurred by patients with cancer."

Mabel Ryder, M.D., with Endocrinology, Diabetes, Metabolism, and Nutrition at Mayo Clinic in Rochester, Minnesota, comments: "As many patients with well-differentiated thyroid cancer tend to do well clinically following surgery with or without radioactive iodine, these patients are followed in Endocrinology instead of Medical Oncology. As a result, many patients with well-differentiated thyroid cancer were not receiving survivorship support or resources prior to implementing the SCP. At one point or another, many patients have been told they have the 'good cancer.'

"After delivery of the SCP in a survivorship visit along with a review of their laboratory tests and imaging studies, many patients have voiced that although they have been told they have the 'good cancer,' they still have fears of recurrence and uncertainties about the future. Others have expressed feeling unvalidated in seeking cancer resources as they have the 'good cancer.'"

Merten adds: "Receiving the SCP with resources validates their diagnosis and empowers these patients to move forward in their cancer journey and lessens their uncertainty — something we hope to measure in a future study. At the end of the visit, patients receive two copies of their SCP (one for them and one to share with their primary care provider), with a third copy scanned into the electronic health record. Data taken during the six-month pilot following implementation of survivorship care plans in April 2017 demonstrated that those patients nearer to diagnosis required more time in a face-to-face visit, compared with those further out from diagnosis and treatment. During the six-month pilot, 84 percent of eligible patients received an SCP."

It has taken a team effort to successfully identify patients eligible for an SCP, as these patients are not seen in an oncology practice and are intermixed in the scheduling of patients with other thyroid diseases.

Marius N. Stan, M.D., with Endocrinology, Diabetes, Metabolism, and Nutrition at Mayo Clinic in Rochester, Minnesota, explains: "Initially, our scheduling office and desk staff worked meticulously to assist in identifying eligible patients. As another real-time means to identify eligible patients, endocrinologists seeing patients can order a future appointment in the thyroid cancer survivorship program clinic. Once patients are identified and scheduled in a survivorship appointment type, an automatically generated message is sent to our nursing staff, who then begin the pre-visit manual preparation of populating the SCP with the patient-specific information.

"Our institution has recently transitioned to a new electronic health record. Our next phase will be automating this process further through that record."

For more information

Institute of Medicine and National Research Council. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, D.C.: The National Academies Press; 2006.

Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care. Chicago, Ill.: American College of Surgeons; 2015.