The prevalence and Impact of Social Media to seek Support and Health Information in Women with Endometriosis.

This study aims to identify if women with a diagnosis of endometriosis are using social media to gain health information, share stories and both provide and receive online support regarding endometriosis. Patient completed questionnaire. We will recruit women with a confirmed diagnosis of endometriosis who are patients of the Royal Women’s Hospital. Recruited participants will be provided with a once off electronic questionnaire to complete. The survey will use skip technology and be able to be completed in less than 20 minutes to encourage participation. Basic demographic information will be captured followed by more in-depth questions regarding social media use pertaining to the primary and secondary outcomes. This questionnaire and the subgrouping of social media platforms is modelled after an online global survey of social media use in patients with chronic pain. It has then been modified to patients with endometriosis and to meet our desired study outcomes. Questionaries will be distributed via a third-party online survey tool (SurveyMonkey) to be completed on the patent’s personal electronic devices. Participants can ask to complete a paper-based survey if they wish. These will be provided to women to be filled out at the time of engagement with the study. Patient Information and Consent Forms (PICF) will be provided at the start of the questionnaire prior to commencing. Information on how to access the online survey tool will be provided to potentially interested parties at the initial interaction. This will be via sms/email link. Participants will undergo treatment and care as usual, with management not affected by their enrolment in this trial. This will be made clear by the clinician at time of offering participation in study. The study will be offered at the end of the consultation to minimise any disruption to the patient-doctor therapeutic relationship. The majority of patients will be recruited through the Gynaecology 2 Unit at the Royal Women's Hospital which operates on 5-10 cases of endometriosis per week. The targeted clinics include General Gynaecology clinics and post-operative clinics, each of which is held once a week. The number of women seen in these clinics range between 30-40; with at least 10 per clinic likely to meet inclusion criteria. Additional patients will be approached in chronic pain clinic and via phone. The survey only needs to be done as a once off participation event and therefore high rates of survey completion are predicted. With a conservative estimate of 25% of approached women completing the survey, recruitment of 100 participants is expected to be achieved over a six-month period. Data entry will occur concurrently with recruitment, with a further 3 months allocated to analysis of results. Therefore, a generous timeframe for completion of the study would be 12 months.