Improving public understanding of ‘overdiagnosis’ in England: a population survey assessing familiarity with possible terms for labelling the concept and perceptions of appropriate terminology

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.