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Improving public understanding of ‘overdiagnosis’ in England: a population survey assessing familiarity with possible terms for labelling the concept and perceptions of appropriate terminology
  1. Alex Ghanouni,
  2. Cristina Renzi,
  3. Jo Waller
  1. Research Department of Behavioural Science and Health, University College London, London, UK
  1. Correspondence to Dr Jo Waller; j.waller{at}ucl.ac.uk

Abstract

Objectives Communicating the concept of ‘overdiagnosis’ to lay individuals is challenging, partly because the term itself is confusing. This study tested whether alternative descriptive labels may be more appropriate.

Design Questionnaire preceded by a description of overdiagnosis.

Setting Home-based, computer-assisted face-to-face survey.

Participants 2111 adults aged 18–70 years in England recruited using random location sampling by a survey company. Data from 1888 participants were analysed after exclusions due to missing data.

Interventions Participants were given one of two pieces of text describing overdiagnosis, allocated at random, adapted from National Health Service breast and prostate cancer screening leaflets.

Primary and secondary outcome measures Main outcomes were which of several available terms (eg, ‘overdetection’) participants had previously encountered and which they endorsed as applicable labels for the concept described. Demographics and previous exposure to screening information were also measured. Main outcomes were summarised with descriptive statistics. Predictors of previously encountering at least one term, or endorsing at least one as making sense, were assessed using binary logistic regression.

Results 58.0% of participants had not encountered any suggested term; 44.0% did not endorse any as applicable labels. No term was notably familiar; the proportion of participants who had previously encountered each term ranged from 15.9% to 28.3%. Each term was only endorsed as applicable by a minority (range: 27.6% to 40.4%). Notable predictors of familiarity included education, age and ethnicity; participants were less likely to have encountered terms if they were older, not white British or had less education. Findings were similar for both pieces of information.

Conclusions Familiarity with suggested terms for overdiagnosis and levels of endorsement were low, and no clear alternative labels for the concept were identified, suggesting that changing terminology alone would do little to improve understanding, particularly for some population groups. Explicit descriptions may be more effective.

  • epidemiology
  • public health
  • health policy

This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Contributors All authors conceived and designed the study. AG analysed the data. All authors participated in the interpretation of results. All authors drafted the manuscript, participated in critical revision and approved the final version.

  • Funding This work was supported by a programme grant from Cancer Research UK awarded to Professor Jane Wardle (C1418/A14134). Jo Waller is supported by a Career Development Fellowship from Cancer Research UK (C7492/A17219).

  • Disclaimer Cancer Research UK was not involved in the design of this study; the collection, analysis, or interpretation of the results; in the writing of the manuscript; or in the decision to submit for publication.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Institutional approval was granted by the University College London Research Ethics Committee (5771/002).

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

  • Data sharing statement No additional data are available.