Patient Perspectives on the Extent of Surgery and Radioactive Iodine Treatment for Low-Risk Differentiated Thyroid Cancer

Abstract

Objective: To understand patient perspective regarding recommended changes in the 2015 American Thyroid Association (ATA) guidelines. Specifically, in regard to active surveillance (AS) of some small differentiated thyroid cancer (DTC), performance of less extensive surgery for low-risk DTC, and more selective administration of radioactive iodine (RAI).

Methods: An online survey was disseminated to thyroid cancer patient advocacy organizations and members of the ATA to distribute to the patients. Data were collected on demographic and treatment information, and patient experience with DTC. Patients were asked "what if" scenarios on core topics, including AS, extent of surgery, and indications for RAI.

Results: Survey responses were analyzed from 1546 patients with DTC: 1478 (96%) had a total thyroidectomy, and 1167 (76%) underwent RAI. If there was no change in the overall cancer outcome, 606 (39%) of respondents would have considered lobectomy over total thyroidectomy, 536 (35%) would have opted for AS, and 638 (41%) would have chosen to forego RAI. Moreover, (774/1217) 64% of respondents wanted more time with their clinicians when making decisions about the extent of surgery. A total of 621/1167 of patients experienced significant side effects with RAI, and 351/1167 of patients felt that the risks of treatment were not well explained. 1237/1546 (80%) of patients felt that AS would not be overly burdensome, and quality of life was the main reason cited for choosing AS.

Conclusion: Patient perspective regarding choice in the management of low-risk DTC varies widely, and a large proportion of DTC patients would change aspects of their care if oncologic outcomes were equivalent.

Keywords: active surveillance; decision-making; patient perspective; radioactive iodine; survivorship; thyroid cancer.

Figure 1.

Flow diagram of survey respondent eligibility. MTC, medullary thyroid carcinoma; PDTC, poorly differentiated thyroid carcinoma; ATC, anaplastic thyroid carcinoma; NIFTP, Noninvasive Follicular Thyroid Neoplasm with Papillary-like Features; DTC, well-differentiated thyroid carcinoma

Figure 2.

Response to the question “Recent studies have shown that some patients with low-risk thyroid cancer could have half of the thyroid removed instead of all of the thyroid removed with the same overall cancer outcomes. If this option had been available and appropriate for you, would you have been interested in choosing it?”

Figure 3.

Response to the question “What additional information do you think could help inform your decision about extent of surgical resection? (check all that apply)” among respondents.

Figure 4

A) Response to the question “If an option had existed for you to observe your thyroid cancer instead of undergoing surgery, with the same outcome in terms of cancer survival, would you have considered observation?” 4B) Response to the question “Observation should only be performed under the guidance of an experienced thyroid cancer management team that uses high quality neck ultrasound. Given your care experience, do you feel that you would have those resources readily available to allow observation as an option?” 4C) Response to the question “Observation of thyroid cancer requires regular follow-up every 6 months, then annually after 2 years. Would long-term follow-up be considered too burdensome?”

Figure 5.

Response to “Do you believe you have suffered side effects from radioactive iodine therapy? If so, which side effects have been bothersome for you? (check all that apply)”

Figure 6

(A, B). Responses to “If your physician explained that radioactive iodine therapy was optional for your stage of disease and not definitely recommended, would you choose to pursue radioactive iodine therapy?” (A) All patients, (B) Only patients who underwent RAI therapy