Materials and methods

We conducted a cross-sectional study using an anonymous, open, web-based survey administered through Qualtrics, a secure online survey platform, to assess perceived access to endometriosis-related care and associated barriers. Exact survey questions can be found in the Appendices. This study was reviewed by the University of South Florida Institutional Review Board and determined to be exempt from full review (IRB study #007633). Participants provided electronic informed consent before survey initiation. Data were collected between January 29, 2025, and April 10, 2025.

Eligible participants were adults aged ≥18 years who were fluent in English or Spanish and who self-reported a previous clinical diagnosis or suspicion of endometriosis. The majority reported physician-confirmed diagnoses. Individuals who did not meet age, diagnostic, or language criteria were excluded. The survey was open internationally, and the country of residence was self-reported.

Participants were recruited through convenience sampling using an open survey design. Recruitment occurred via internet-based outreach and community-based advertising, including social media platforms, national and international endometriosis advocacy organizations, and printed flyers posted in outpatient obstetrics and gynecology clinics at the study institution. Recruitment materials invited individuals with suspected or confirmed endometriosis to voluntarily participate in a brief survey about access to endometriosis-related care. Participation was not required to access any website, service, or clinical care, and no incentives were offered.

The survey was administered entirely online, and responses were captured automatically by the Qualtrics platform without manual data entry. Only fully completed questionnaires were included in the analytic sample. Because recruitment occurred through an open survey design distributed across multiple online and community-based platforms, view, participation, and completion rates could not be reliably calculated.

The electronic informed consent page described the study’s purpose, investigator identities, the voluntary nature of participation, the estimated completion time (approximately 5 minutes), the types of data collected, and data storage procedures. Participants were informed that no personally identifiable information would be collected and that study data would be retained for five years following study completion.

Survey data were stored on password-protected Qualtrics servers and downloaded to encrypted, institutionally approved systems accessible only to authorized study personnel. Cookies were used by the Qualtrics platform to reduce the likelihood of multiple survey submissions. IP address checks, log file analyses, and timing-based exclusions were not performed.

The questionnaire was available in English and Spanish and included items assessing demographics, clinical history, and perceived access to endometriosis-related care. Survey items were adapted from existing instruments, including the PAHQ and the World Endometriosis Research Foundation’s EPHect Patient Questionnaire. Because the final instrument incorporated adapted and newly developed items, it was intended to assess feasibility and clarity rather than serve as a formal validation study.

Before dissemination, the survey underwent internal testing by the research team to assess usability, readability, and technical functionality within the Qualtrics platform. Spanish-language translation accuracy was confirmed through back-translation and review by bilingual researchers to ensure linguistic and cultural equivalence. Survey items were presented in a fixed order with adaptive questioning for certain items. The questionnaire consisted of approximately 10 items distributed across five screens. Missing responses were permitted, and completeness was assessed post-hoc. Respondents were able to review and modify their responses before final submission. Finally, because the survey was anonymous and contained demographic and geographic detail that could pose a re-identification risk for small subgroups, the de-identified dataset and analysis code are available from the corresponding author on reasonable request, subject to confirmation that re-identification risk is minimized.

The primary outcome was perceived access to endometriosis-related care. Secondary outcomes included access to endometriosis specialists, referral experiences, financial barriers, travel burden, and other reported barriers to obtaining care.

Quantitative analyses were descriptive and comparative. Categorical variables are summarized using frequencies and percentages. Participants were stratified by Hispanic ethnicity and country of residence into four groups: U.S. non-Hispanic, U.S. Hispanic, non-U.S. non-Hispanic, and non-U.S. Hispanic. Chi-square or Fisher’s exact test was used for categorical comparisons. Pairwise comparisons used U.S. non-Hispanic participants as the reference group. Analyses were exploratory, and no statistical weighting or correction was applied. A two-sided p-value <0.05 was considered statistically significant.