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Public perceptions of changing the terminology for low-risk thyroid cancer: a qualitative focus group study
  1. Brooke Nickel1,2,
  2. Caitlin Semsarian3,
  3. Ray Moynihan1,4,
  4. Alexandra Barratt1,
  5. Susan Jordan5,6,
  6. Donald McLeod5,7,
  7. Juan P Brito8,
  8. Kirsten McCaffery1,2
  1. 1 Wiser Healthcare, School of Public Health, University of Sydney, Sydney, New South Wales, Australia
  2. 2 Sydney Health Literacy Lab, School of Public Health, University of Sydney, Sydney, New South Wales, Australia
  3. 3 Faculty of Medicine and Health, The University of Sydney, Sydney, Australia
  4. 4 Centre for Research in Evidence-Based Practice, Bond University, Herston, Queensland, Australia
  5. 5 Cancer Causes and Care, QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia
  6. 6 School of Public Health, The University of Queensland, Herston, Queensland, Australia
  7. 7 Department of Endocrinology and Diabetes, Royal Brisbane and Women’s Hospital, Herston, Queensland, Australia
  8. 8 Division of Endocrinology, Diabetes, Metabolism and Nutrition, Mayo Clinic, Rochester, Minnesota, USA
  1. Correspondence to Brooke Nickel; brooke.nickel{at}sydney.edu.au

Abstract

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.

  • public health
  • qualitative research
  • oncology

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Footnotes

  • Contributors BN, RM, AB and KM conceived the study. BN, RM, AB, SJ, DM, JPB and KM were involved in designing the study and developing the methods. BN and CS coordinated the running of the study and conducted the focus groups. BN and CS analysed the data. BN drafted the manuscript. All authors contributed to the interpretation of the analysis, and critically revised and approved the manuscript.

  • Funding BN was supported by Sydney Catalyst Research Scholar Award. JPB was supported by the Karl-Erivan Haub Family Career Development Award in Cancer Research at Mayo Clinic in Rochester, honouring Richard F. Emslander, M.D. RM, SJ, DM and KM were supported by National Health and Medical Research Council (NHMRC) fellowships (1124207, 1061341, 1092153, and 1029241, respectively). The project was supported by an NHMRC Centre of Research Excellence Grant (1104136).

  • Competing interests RM and KM report that they are co-organisers of the Preventing Overdiagnosis conferences, and the 2017 Australian National Summer on overdiagnosis. AB reports she is chief investigator on a Australian National Health and Medical Research Council (NHMRC) Centre of Research Excellence Grant (1104136).

  • Patient consent Obtained.

  • Ethics approval The study was approved by the University of Sydney Human Research Ethics Committee (2017/813).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data available.

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