MATERIAL AND METHODS
The development and reporting of the study were guided by the CHERRIES checklist13 (Appendix 1).
An anonymous and open international e-survey was distributed from August to October 2019 using SurveyMonkey (San Mateo, California, USA). The primary outcome was the proportion of respondents aware of the utility of various diagnostic tools to diagnose endometriosis. Secondary outcomes attempted to delve deeper into understanding the intricacies of diagnostic tools for various endometriosis disease states and various clinical scenarios, emphasising ultrasound as the typical first-line investigative tool for endometriosis symptomatology.
Original questions were brainstormed and formulated by the research team. These questions were piloted on a group of 10 women in the lay population. Questions were modified according to feedback to improve the interpretability of the questions.
Once ethically approved by the Nepean Blue Mountains Local Health District Human Research Ethics Committee (2019/ETH00444), the survey (Appendix 2) was disseminated via the social media outlets Facebook, Twitter, and Instagram, through collaborations with national and international endometriosis community groups. Reminder posts were sent out one and two months after the initial release of the survey. The target population was a convenience sample; an international and diverse population, encompassing all ethnicities, ages, and genders, was sought to reflect that of the general population. The survey advertisement is depicted in Appendix 3 and includes a recommended short statement for ease of use on social media. Prior to initiating the survey, potential respondents were shown the patient information sheet (Appendix 4). Respondents were told the length of time of the survey, data storage process/policies, security of data, name of the investigator, and purpose of the study. Completion of the survey was voluntary and implied informed consent. No incentives were offered. Respondents took as much time as they needed to consent to provide information in the survey; however, it was impossible to withdraw consent once the survey was submitted.
The survey consisted of 26 questions over 12 pages, with two to five questions per page. Each respondent had the same order of questions. In multiple choice-type questions, the potential responses were displayed in a semi-structured fashion. When appropriate, questions included an option to answer, ”I don’t know” or ”other (please specify)”. Adaptive questioning was used to reduce the number and complexity of questions. No ”completeness check” was required before the survey was submitted. Respondents could not review and change their answers (e.g. through aback button or a review step that displays a summary of the responses) due to the survey’s nature. On page 11 of the survey, respondents were provided with educational information that would have potentially resulted in a difference in their responses to the preceding questions. At the conclusion of the survey, respondents were asked if they learned anything from completing the survey. Multiple responses were turned ”off”, only allowing the survey to be taken once from the same device.
Once collected, the data was stored on the SurveyMonkey server. View, participation, and completion rate were not sought. Completeness rate, defined as the percentage of survey takers that completed the entire survey, was captured by SurveyMonkey. Completed aspects of surveys which were incomplete (where, for example, users did not answer all questions) were included in the analysis. Timestamps were not used, and no timeframe for completion was used as a cut-off to determine inclusion in the analysis. Descriptive statistics were reported using medians/interquartile ranges (IQR), numbers and percentages, and comparisons were made using chi-square tests. Analyses were performed in SAS v9.4 (Cary, USA) and R (R Core Team, 2019)14. The weighting of items or propensity scores have not been used to adjust for a ”non-representative sample”.