McCaffery, Kirsten

Background: The majority of small papillary thyroid cancers (sPTCs) are treated surgically, rather than by active surveillance. Patient and clinician preference for surgery may be partially driven by the use of cancer terminology. Some experts propose that changing terminology would better communicate the indolent nature of sPTCs and improve uptake of active surveillance. Others argue that terminology that includes “cancer” correctly reflects the biological nature of these tumors. The views of informed lay publics can provide value-based perspectives on complex issues and guide policy discussions. Methods: We recruited 40 people for three community juries, held in Sydney, Wodonga, and Cairns, Australia. Participants were of diverse backgrounds and ages, recruited through random digit dialing and a topic-blinded social media strategy. Juries were informed about thyroid cancer, overdiagnosis, and overtreatment, and heard arguments for and against terminology change before deliberation. The deliberative process in Jury 1 led to a refinement of jury charge, the updated version that was then used in Juries 2 and 3. Results: Jury 1 favored no terminology change, and Juries 2 and 3 were divided on the topic. Key reasons for opposing terminology change included a strong desire to retain terminology that aligns with the pathological definition of cancer, and to avoid even a minimal risk of harm that could arise if patients became complacent in follow-up. Key reasons to support terminology change included a desire to reduce psychological distress, stigma, and discrimination associated with a cancer diagnosis, and an argument that terminology change may be a more effective trigger for health system reform compared with other options. The juries unanimously recommended community education and health system reforms to reduce harms of overtreatment, and expressed an expectation that clinicians and researchers reach agreement on clinical guidelines to promote better uptake of active surveillance. Conclusions: The conceptual tension between a pathological and an outcome-based understanding of cancer was apparent in deliberation. This highlights an ongoing challenge for those advocating changing disease terminology. Regardless of action on terminology, jurors shared a strong expectation that practical changes would be made to respond to the harms of overtreatment.

Objectives The use of more medicalised labels can increase both concern about illness and the desire for more invasive treatment. This study analyses the media’s coverage of an Analysis article in The BMJ which generated a large amount of high-profile international media coverage. It aims to understand how to better communicate messages about low-risk cancers and overdiagnosis to the public. Design Content analysis of media coverage. Setting Media was identified by Isentia Media Portal, searched in Google News and cross-checked in Factiva and Proquest databases from August 2018. Methods Media headlines, full text and open access public comments responding to the coverage on the article proposing to ‘rename low-risk conditions currently labelled as cancer’ were analysed to determine the main themes. Results 45 original media articles and their associated public comments (n=167) were identified and included in the analysis. Overall, headlines focused on cancer generally and there was little mention of ‘low-risk’, ‘overdiagnosis’ or ‘overtreatment’. The full text generally presented a more balanced view of the evidence and were supportive of the proposal, however, public responses tended to be more negative towards the idea of renaming low-risk cancers and indicated confusion. Comments seemed to focus on the headlines rather than the full article. Conclusions This study offers a novel insight into media coverage of the complex and counterintuitive problem of overdiagnosis. Continued deliberation on how to communicate similar topics to the public through the mainstream media is needed. Future work in the area of low-risk cancer communication should consider the powerful impact of people’s previous experience with a cancer diagnosis and the criticism about being paternalistic and concealing the truth from patients.

Objectives To investigate public perceptions of overdiagnosis and overtreatment in low-risk thyroid cancer and explore opinions regarding the proposed strategy to change the terminology of low-risk cancers. Design Qualitative study using focus groups that included a guided group discussion and presentation explaining thyroid cancer, overdiagnosis and overtreatment, and proposed communication strategies. Transcripts were analysed thematically. Setting Sydney, Australia. Participants Forty-seven men and women of various ages from a range of socioeconomic backgrounds with no personal history of thyroid cancer. Results Participants had low pre-existing general awareness of concepts of overdiagnosis and overtreatment and expressed concern regarding this new information in relation to thyroid cancer. Overall, participants understood why the strategy to change the terminology was being proposed and could see potential benefits including reducing the negative psychological impact and stigma associated with the term ‘cancer’; however, many still had reservations about the strategy. The majority of the concerns were around their worry about the risk of further disease progression and that changing the terminology may create confusion and cause patients not to take the diagnosis and its associated managements seriously. Despite varied views towards the proposed strategy, there was a strong overarching desire for greater patient and public education around overdiagnosis and overtreatment in both thyroid cancer and cancer generally in order to complement any revised terminology and/or other mitigation strategies. Conclusions We found a strong and apparently widely held desire for more information surrounding the topic of overdiagnosis and overtreatment. Careful consideration of how to inform both the public and current patients about the implications of a change in terminology, including changes to patients’ follow-up or treatments, would be needed if such a change were to go ahead.