Did anonymity in self-administered questionnaires improve disclosure of sensitive information during the 2022 mpox outbreak in England? An observational study

Abstract

Background: Between May 6, 2022, and Jan 16, 2023, 3555 mpox cases were reported in England, predominantly in gay, bisexual, and other men who have sex with men. Initially, the UK Health Security agency administered questionnaires to laboratory-detected cases via telephone calls. From June, 2022, cases were requested by text or email to complete the questionnaire online, with optional anonymous completion. To inform future approaches, we assess whether anonymity improved disclosure of sensitive information.

Methods: In this observational study we analysed questionnaire data completed by people with a laboratory-detected case of mpox. We included questionnaires that were completed from May 25, 2022, to Jan 16, 2023, and restricted them to anonymous or identifiable self-completed responses. Questionnaires with forename, surname, and birth date, or an ID emailed to participants, which therefore could link to laboratory data, were considered identifiable. Questionnaires without any personal identifiable information were considered anonymous. We compared the responses to seven sensitive risk factor or exposure questions using Pearson's χ².

Findings: All 3555 people diagnosed with mpox infection in England were invited to complete the questionnaire through either phone call or web link.We obtained 1075 (30%) completed questionnaires, with a response rate decreasing from 45% in May to 20% in July 2022. We included 531 self-completed questionnaires in this analysis, of which 259 (49%) were anonymous and 272 (51%) were identifiable. The median age of participants was 39 years, with 514 (97%) men, 12 (2%) women, and five (1%) other. The largest ethnic groups were white (79%; n=422) and mixed or multiple ethnic groups (9%; n=47). Results of all seven questions were similar: 98% (n=254/259) of anonymous and 97% (n=265/272) of identifiable cases answered all seven questions, 49% (n=127) and 54% (n=147) reported a sexually transmitted infection diagnosis in the past 12 months (p=0·2), 24% (n=63) and 27% (n=73) reported ten or more sexual partners in the past 3 months (p=0·8), and 15% (n=38) and 18% (n=50) reported knowing another person with mpox infection (p=0·5), respectively.

Interpretation: Transitioning to self-completed questionnaires resulted in reduced uptake, although optional anonymity possibly prevented a steeper drop. Anonymity did not appear to affect reporting of sensitive information, specifically of sexual behaviours or history associated with mpox risk, which reinforces results of previous literature. Our interpretation is limited, however, by relatively low questionnaire uptake, and by only analysing reported rather than true risk. The decision to implement anonymous questionnaires should therefore weigh the potential benefits of increased uptake against the disadvantage of restricted data linkage.

Funding: None.