Development of a Decision Aid for Patients With Low-Risk Thyroid Cancer: A Mixed-Methods Analysis of Feedback From Both Patient and Clinicians.

Introduction: Guideline-driven de-escalation of the extent of surgery for low-risk thyroid cancer has made treatment decisions more complex. Shared decision-making (SDM) is more involved than informed consent, improves patient satisfaction, and is considered standard of care. Patient decision aids (DA) can facilitate SDM but appropriate resources are lacking.

Methods: DA development occurred in 3 main phases. First, a prototype DA was developed and refined by a working group (clinicians, behavioral scientists, nurses, and trained consumer). Nationwide clinician consultation sessions obtained mixed-methods feedback leading to a hybrid paper-web DA ready for patient testing. Second, the paper DA was used within clinically appropriate consultations (Bethesda 3-6 thyroid nodules) and patient feedback obtained with the Ottawa acceptability and decisional conflict scales. Three cycles of iterative changes were made to the DA. Patient focus groups led to further refinements. Third, 40 clinicians were invited to review DA materials, providing mixed-methods feedback.

Results: Initial clinician consultation sessions (n = 113) revealed that surgeons used information resources more frequently in, and were more satisfied with, their current patient discussions around thyroid cancer management compared with endocrinologists (88% vs. 32% and 95% vs. 46% respectively, p < 0.01 for both). 95% of clinicians were open to using the DA, but concerns regarding availability, appropriateness, flexibility, credibility and potential to lengthen consultations, were raised. Patients reported that the DA was useful (97% paper, 100% web) and sufficient (85% paper, 100% web). Decisional conflict was low (17 paper vs. 12 web). Qualitative feedback led to changes to improve visual appeal, readability and minimize emotive responses. Clinician review of DA (60% response) reported no bias (73% paper, 79% web) and 86% felt the DA would be easily incorporated into practice.

Conclusion: We present a hybrid paper and web-DA ready for wider testing in patients with low-risk thyroid cancer to complement SDM regarding the extent of surgery.