Abstract
KEY POINTS
Patients and physicians perceived high levels of shared decision-making (SDM) during consultations for indeterminate thyroid nodules (ITNs), yet observer-rated SDM was low. This discrepancy suggests that what patients and clinicians value in these encounters may extend beyond the formal components captured by SDM frameworks.
Despite high perceived SDM, 13% of patients experienced clinically significant decisional conflict. Lower patient-perceived SDM was associated with higher decisional conflict, underscoring that meaningful patient engagement promotes greater clarity and confidence in decision-making.
No validated decision aids currently exist for ITNs. Given the complexity of management decisions in this setting, developing tools to support these conversations should be a priority.
SUMMARY
Background
Thyroid nodules are common, found in over 60% of the population, and most are benign. 1 Bethesda III (atypia of undetermined significance) and Bethesda IV (follicular neoplasm) thyroid nodules carry an indeterminate risk of malignancy—estimated at 13 to 30% and 23 to 34%, respectively. 2 Guidelines from the American Thyroid Association permit management options for these indeterminate thyroid nodules (ITNs) depending on the cytologic category, including molecular diagnostic testing (if available), repeat fine-needle aspiration (FNA) biopsy, ultrasound surveillance, and diagnostic hemithyroidectomy. 3 The presence of multiple feasible options generates clinical equipoise and has been shown to cause decisional conflict (DC) and uncertainty in patients. Shared decision-making (SDM) is a process that encourages collaborative involvement of patients and physicians in medical decision-making; it is especially important in settings of clinical equipoise, such as the management of ITNs. The purpose of this study 4 was to investigate perceived and objective SDM during initial surgical consultations for ITNs and to examine the relationship between SDM and patient-perceived DC.
Methods
This was a multi-institutional, cross-sectional study conducted at two Canadian academic centers: the Queen Elizabeth II Health Science Centre in Halifax, Nova Scotia (October 2020 to June 2023), and The Ottawa Hospital in Ottawa, Ontario (November 2022 to June 2023). 4 Adults with Bethesda III or Bethesda IV thyroid nodules who were scheduled for an initial consultation with a fellowship-trained otolaryngologist–head and neck surgeon were eligible. Patients were excluded if they had insufficient English-language proficiency or had previously resected ITNs. Consultations were video recorded. Patient-perceived SDM was measured using the SDM Questionnaire-9 (SDM-Q-9), 5 physician-perceived SDM using the SDM-Q-Doc, 6 and observer-determined SDM using the Multifocal Approach to Sharing in SDM 7 instrument. DC was measured using the 16-item Decisional Conflict Scale (DCS), 8 with scores ≥25 considered clinically significant. Associations between clinicodemographic factors and SDM were assessed using a generalized linear multivariable model.
Results
Seventy-seven patients and 6 surgeons were enrolled. The mean (±standard deviation) patient age was 55.7 ± 15.9 years, and most were female (59.7%). The majority of nodules were Bethesda III (92.2%), with the remainder Bethesda IV (7.8%). Management decisions included surveillance (45.5%), surgery (36.6%), and repeat FNA biopsy (13.0%); no patients opted for molecular testing.
Patient-perceived SDM was high, with a mean SDM-Q-9 score of 94 ± 7.61 and 51.4% of patients reporting maximum scores. Physician-perceived SDM was lower, with a mean SDM-Q-Doc score of 83 ± 9.14 and maximum scores reported for only 10.8% of patient interactions. In contrast, on a scale of 0 to 4, observer-determined SDM was low across all three subdomains: patient (mean, 0.73 ± 1.08), physician (mean, 1.71 ± 1.33), and patient–physician dyad (mean, 1.75 ± 1.27).
The mean DCS score was 9.83 ± 15.26, and clinically significant DC (DCS ≥25) was reported by 13.2% of patients. There was a moderate negative correlation between patient-perceived SDM and DC (Pearson r, −0.311, p = 0.008). No associations were found between DC and either physician-perceived or observer-determined SDM. Patient-perceived SDM did not differ by age, sex, education level, ethnicity, income, attending surgeon, or study site.
Conclusions
Patients and physicians both perceived high levels of SDM during surgical consultations for ITNs, whereas observer-determined SDM was low. A clinically significant degree of DC persisted in a subset of patients, and lower patient-perceived SDM was associated with higher DC. These findings support the need for validated decision aids to improve SDM and reduce DC in this setting, particularly given that no such tools currently exist for the management of ITNs.
COMMENTARY
ITNs occupy a uniquely challenging space in clinical medicine. Unlike most diagnostic categories, in which cytopathology narrows management toward a single recommended course of action, Bethesda III and IV nodules leave both patients and physicians in a state of genuine equipoise. 3 Most ITNs prove benign on surgical pathology, yet the risk of malignancy is high enough that surveillance alone may feel inadequate. 3 At the same time, obtaining a definitive diagnosis through diagnostic lobectomy carries its own consequences: surgical risks, permanent hypothyroidism, and the psychological burden of undergoing an operation that may ultimately prove unnecessary. In this setting, SDM is an essential component of high-quality care.
Taylor et al. have contributed an important and methodologically novel study that is highly relevant to clinicians involved in the management of ITNs. Their central finding is that patients and physicians perceived high levels of SDM, while observer-determined SDM was low. The authors conclude that self-reported scores may not adequately reflect the complexity of SDM. However, I interpret their findings somewhat differently. Although the study aimed to measure the SDM process itself, patients and physicians may instead have been reporting on the broader therapeutic encounter, including elements such as the therapeutic alliance and patient-centered care. 9 For patients, this likely reflects experiences such as feeling heard, respected, and supported during the consultation—outcomes that are meaningful even if the formal elements of SDM are not explicitly demonstrated. Observer-based instruments, on the contrary, assess formal components of SDM: elements such as explicitly discussing all treatment options, clarifying values, or arriving at a jointly negotiated decision. In this sense, observers were rating one dimension of a high-quality therapeutic encounter, SDM, while patients and physicians were rating the encounter as a whole. 9 These findings suggest that separating the quality of SDM (a communicative process) from the therapeutic alliance (a relational construct) and patient-centered care (a guiding philosophy) may be inherently difficult. 9
Taylor et al. also found that higher patient-perceived SDM was associated with lower decisional conflict. This finding is clinically intuitive and consistent with the existing literature. 10 However, patient preferences for involvement in decision-making are heterogeneous. The SDM-Q-9 itself acknowledges this variability through the item “My doctor wanted to know exactly how I want to be involved in making the decision.” 5
Clinicians must therefore balance engaging patients in decision-making with maintaining their own role as clinical experts. Providing excessive information or shifting the decisional burden entirely onto patients risks leaving patients feeling overwhelmed while physicians inadvertently abdicate their advisory role. 11
Clinicians who regularly counsel patients with ITNs will also recognize that decisional clarity is shaped not only by how much information is provided but also by how that information is framed and by whom. In this study, consultations were conducted exclusively by otolaryngologist–head and neck surgeons. A surgeon meeting a patient following an indeterminate FNA result may naturally emphasize the safety of thyroid surgery, the potential risks of surveillance, and the consequences of delaying treatment for a possible malignancy. An endocrinologist, in contrast, might begin by discussing the natural history of ITNs, the high rate of benign findings among resected nodules, and the quality-of-life implications of permanent hypothyroidism. Neither framing is purposefully misleading, yet neither is entirely complete. The decision a patient ultimately reaches may reflect the lens through which the information was presented as much as their own values and preferences.
Standardized, evidence-based materials such as decision aids and visual tools may offer a path to overcome this framing effect. Singh Ospina et al. 12 evaluated a thyroid nodule conversation aid, which demonstrated improved observed SDM and reduced decisional conflict in clinical encounters for thyroid nodule evaluation. Notably, physicians and patient–physician dyads in the study by Taylor et al. scored lowest on “choosing a preferred communication approach: visual aids, written information, or involving another family member.”This finding likely reflects both time constraints and the absence of ready-to-use tools for this patient population.
Several limitations should be considered when interpreting these findings. First, the study captured only the surgical consultation, which represents only one node in what is typically a multiple-encounter decision-making process. Many patients with ITNs will have had prior discussions with a primary care physician or endocrinologist before arriving at the surgical consultation. The degree to which prior conversations shape the patient’s baseline preferences, information state, and perceived involvement is unknown. Second, molecular testing was not selected by any patient in this cohort. The authors acknowledge that this likely reflects the absence of public funding for these assays in Canada. The generalizability of these findings to settings where molecular testing is a funded and routinely offered option warrants consideration.
Overall, Taylor et al. have provided a timely and methodologically rigorous contribution to understanding SDM in the ITN setting. Their work demonstrates that the subjective experience of decision-making and its objective quality are not equivalent, that a meaningful minority of patients carry clinically significant decisional conflict out of these consultations, and that validated tools to support better outcomes are not yet available. Developing those tools, informed by the patient perspectives and communication patterns this study documents, should be an important priority for the field.