Objectives Given recent evidence of overdiagnosis and overtreatment of small papillary thyroid cancers (PTCs) and other low risk cancers, strategies are needed to help patients consider less invasive management options. This study aims to: (1) determine which management-related factors influence preferences for management options for PTC; (2) determine the trade-offs in treatment factors people are willing to accept; and (3) understand how terminology (cancer terminology versus non-cancer terminology) influences preferences and benefit harm trade-offs.

Method PTC management preferences were evaluated using a discrete choice experiment (DCE). Participants were presented with a series of questions, asking them to choose between three management options for PTC (thyroidectomy, hemi-thyroidectomy and active surveillance) described by varying combinations of attribute levels. Participants were randomised to receive one of two frames of information based on the terminology used to describe the condition: ‘papillary thyroid cancer’ or ‘papillary thyroid lesion’. The outcome variable was management preference; attributes and sociodemographic characteristics were explanatory variables. Analyses were conducted using a mixed logit (ML) model in NLOGIT 5.0.

Results The DCE was completed by 2054 men and women aged 18 years and above with no history of thyroid cancer. Participants preferred options with less frequent follow-up, lower out of pocket costs, lower chances of having voice and calcium level problems, a lower risk of developing invasive thyroid and of dying of thyroid cancer. The chance of experiencing fatigue did not influence preferences. Benefit harm trade-offs found respondents were willing to accept a higher likelihood of adverse effects to avoid invasive thyroid cancer diagnosis or thyroid cancer death when the condition was described as a cancer compared to a lesion. For both the ‘cancer’ and ‘lesion’ terminology, the health literacy consistently impacted preferences for management options. Those with lower health literacy were significantly more likely to prefer more invasive management options (full surgery compared to partial surgery and monitoring).

Conclusions This study makes an important contribution to our understanding of how attributes of management options, terminology and patient characteristics, in particular health literacy, influence management decision making for PTC. As guidelines supporting less aggressive management continue to emerge as a result of increasing evidence of the indolent nature of PTC and other low risk cancers, strategies to deal with potential overtreatment are critically needed. Furthermore, clinician understanding of what drives patient management preferences and decision making is fundamental in order to help patients make decisions that align with their preferences.