Low risk ‘cancers’: how terminology impacts experiences of diagnosis, treatment preferences and psychological outcomes

Abstract

A range of conditions with indolent to fast-growing lesions are labelled as ‘cancer’. Lesions with low malignant potential are common, and with the advent and use of increasingly sensitive technologies these indolent lesions and their precursors are now more frequently clinically identified. There have been recommendations from international expert groups, including a United States National Institute of Health panel and the National Cancer Institute working group, to change the terminology of these indolent lesions by removing the term ‘cancer’, as one strategy to address and reduce the growing concerns about overdiagnosis and subsequent overtreatment. Using a mixed method approach this thesis examined how terminology for low risk ‘cancers’ impacts diagnosis experiences, treatment preferences and psychological outcomes, in particular focusing on the context of low risk papillary thyroid cancer. After an introductory chapter, the thesis presents seven papers and ends with a discussion and conclusion chapter. Findings from the thesis lend support to the strategy of changing the terminology of low risk ‘cancers’ in order to help curtail overdiagnosis and overtreatment. Specifically, this thesis provides the first evidence on the impact of terminology for low risk papillary thyroid cancer. It demonstrates that use of the term ‘cancer’ can influence both clinician and patients’ experience of diagnosis, drive the desire more aggressive treatments, and can alter psychological outcomes. The information presented provides a body of work which may help enable potential future communication strategies for low risk cancers in order to shift assumptions that immediate invasive treatments are always needed, aid in the consideration of more conservative management options and allow for better shared decision making between clinicians and patients.