Survivorship Clinics—A Second Opportunity for Genetic Risk Stratification

TON - July 2017, Vol 10, No 4 - Genetic Counseling
Cristi Radford, MS, CGC
Nicole Centers, BSN, RN, OCN, CBCN, CN-BN

As mentioned by Angela R. Bradbury, MD, Assistant Professor, Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, at the 2017 Cancer Survivorship Symposium, one of the challenges of improving cancer care is the integration of genetic risk assessment into survivorship care.1

One place that opportunity exists is during a survivorship clinic visit. Survivorship clinics are important for individuals with and without a genetic diagnosis. During a survivorship clinic, patients can be stratified into 3 main groups, including individuals with gene mutations, individuals with a negative or a variant of uncertain significance (VUS) genetic test result, and individuals who did not undergo genetic testing. It is important to keep in mind that individuals in any of these groups may still be candidates for additional genetic analyses or targeted surveillance plans.

For individuals with a gene mutation, the survivorship clinic serves as an opportunity to review current guidelines for risk management, as they may have changed since the patient was first diagnosed. In addition, they serve as a second opportunity to discuss the importance of testing for family members, help address any misconceptions surrounding genetic testing, and determine if additional genetic testing may be appropriate.

For individuals who were previously tested and found to be negative or have a VUS, the survivorship clinic provide an opportunity to perform additional genetic testing (ie, “update” testing) that may not have been available when the patient was first tested. It is also possible that a VUS result may have been reclassified, and the survivorship clinic provides an opportunity to check with the laboratory for any updates. Finally, for individuals who were never tested, the clinic provides an opportunity for risk stratification to determine whether the individual is a candidate for genetic testing.

Some of these individuals may have been offered genetic testing in the past and declined. Reasons could have included being overwhelmed with their diagnosis and treatment plan, or the cost of testing.2 For individuals who declined because of cost, the current cost may be very different than what it was at the time when the genetic testing was initially offered. For example, 5 years ago, the cost of BRCA1/2 sequencing and deletion/duplication analysis was several thousand dollars. Now, an individual can obtain a BRCA1/2 analysis—as well as an analysis for many other inherited cancer genes simultaneously—for several hundred dollars. At a survivorship clinic, these individuals may be willing to revisit the option of genetic testing.

Although the American College of Surgeons Commission on Cancer and American Society of Clinical Oncology currently require the incorporation of genetic testing into a survivorship care plan (SCP) for certain cancers,3,4 some programs are struggling to integrate the testing into the SCP. One program that has had success is the Breast Health and Survivorship Program at Florida Hospital Celebration Health. This program has a clinic coordinator who is a registered nurse certified in several areas of oncology care. The clinic coordinator is not only responsible for developing and coordinating programming for breast health (including screening to cancer) patients, but also for developing and coordinating a genetic health program that screens for all genetically predisposed cancers, as well as their follow-up care. This includes helping the patient understand the recommendations of increased surveillance, and assisting the patient’s physicians with prior authorizations and the rationale for increased surveillance. If surgery is desired, appointments with providers are made and records are sent.

The Survivorship Clinic at Florida Hospital Celebration Health

Florida Hospital Celebration Health began its multidisciplinary survivorship clinic in 2017 and its screening genetic clinic in 2016. The screening genetic clinic is unique in that it takes direct referrals from hospital-affiliated physicians and community providers, and potential patients can refer themselves. In addition, prospective candidates are also identified with a paper screening tool in the mammography center.

Similar to many community programs, the Florida Hospital Celebration Health program does not employ a certified genetic counselor. Immediately after the program launched, the clinical coordinator recognized the opportunity for incorporating genetic testing into its newly developed survivorship clinic, and the Genetic Program Director and stakeholders agreed.

As the survivorship program was rolled out and implemented, genetic risk assessment was an integral part of the SCP and long-term care planning for patients. This would also provide a source for downstream revenue, as future appointments and screenings are incorporated into the plan for all patients who have completed their cancer care, even if their only component was surgery. It was determined that the genetic risk assessment component would be incorporated at the time of the rollout to ensure that the assessment was part of the plan, and so that all training could occur simultaneously. In addition, this would limit the risk for the assessment to be perceived as an add-on piece to the plans when future changes are made in the program.

During a survivorship program, clinic coordinators review the patient’s treatment history and look for notes regarding the patient’s genetic risk assessment and/or testing. Any notes regarding testing, or denial thereof, is noted in the SCP. If a patient was not screened, a screening is performed at their survivorship clinic visit. If the patient qualifies for testing and initially denied it, the rationale for declining is explored and he or she can still opt to not pursue testing. If the patient now desires testing, or is qualified and was never offered testing, it is performed at the survivorship clinic visit. If a provider cannot perform the testing at the time of the visit, the patient is directly referred to the Genetic Health Clinical Coordinator, and accommodations are made for the patient to be tested. Testing intentions and notes are added to the SCP at that time, and the plan is reprinted. Family members are offered testing at this time as well, and can pursue the testing in the Genetic Screening Clinic. For patients needing additional surveillance, the oncologist coordinates an imaging plan with their referring physician for ownership of test scheduling and prior authorizations.

Since the program’s inception, 60 patients have been screened, 6 (10%) nontested individuals were identified, and 3 patients have proceeded with genetic testing. The identification of these 6 individuals screened to date demonstrates that survivorship clinics do in fact serve as a second opportunity for genetic risk stratification and testing.

1. Bradbury AR. Integrating genetic information into clinical care. Presented at: 2017 Cancer Survivorship Symposium; January 27-28, 2017; San Diego, CA.
2. Ruddy KJ, Risendal BC, Garber JE, Partridge AH. Cancer survivorship care: an opportunity to revisit cancer genetics. J Clin Oncol. 2016;34:539-541.
3. Commission on Cancer. Cancer program standards: ensuring patient-centered care. 2016 edition. Standard 3.3. Accessed June 15, 2017.
4. American College of Surgeons. Accreditation committee clarifications for standard 3.3 survivorship care plan. Accessed June 15, 2017.

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Last modified: January 17, 2018