(030) Time Is Relative: Perceptions of Time to Diagnosis Among a Diverse U.S.. Sample With Endometriosis

Abstract Introduction Endometriosis affects approximately 10% of reproductive-aged individuals worldwide, yet diagnostic delay remains a problem. Delays impede care, evidence-based treatment, and symptom relief. Endometriosis is associated with chronic pain and infertility through its impact on reproductive anatomy and pelvic inflammation. Individuals with endometriosis experience dyspareunia at higher rates than their counterparts, reducing quantity and quality of intercourse. Patients report detrimental effects on relationships, confidence, and self-esteem. Previous investigations into diagnostic timing focused on measuring objective dimensions of delay (eg, time from symptom onset to diagnosis); patients’ subjective perceptions of diagnostic timeliness have been largely overlooked. Centering patient perceptions will provide insight into modifiable risks for diagnostic delay and possible interventions to improve experiences and timing. Objective This study examined perceptions of time to diagnosis among individuals with endometriosis and explored factors influencing perceived diagnostic pathways as timely or delayed. Methods We conducted qualitative semi-structured interviews with individuals diagnosed (provider-presumed or surgically-confirmed) with endometriosis. Data came from a sample purposively selected to include individuals across socioeconomic status (SES) (higher/lower based on education) and self-identified race/ethnicity (Black, White, Latina/Hispanic). Spanish-language interviews were available. Participants shared whether they considered their diagnostic pathway timely or delayed and explained the reasoning behind their perception. Interviews were audio-recorded, transcribed, and checked for accuracy. We developed a coding scheme applied to all interviews, with the first author doing initial coding and a second author reviewing for consistency. Following coding, we completed conventional content analysis comparing responses within and across SES and race/ethnicity groups. Results Among 37 participants, there were diverse SES and race/ethnicity represented (Higher SES N = 18; Lower SES N = 19; White N = 12, Black N = 12, Latina/Hispanic N = 13). Seven participants preferred Spanish language interviews. Mean total time to diagnosis (first symptoms to diagnosis) was 9.5 years (range, 5 months-29 years). Most participants considered time to diagnosis long (N = 33); four described the time as short. Perceptions of time were incongruent with objective time measurements. Participants with the shortest times to diagnosis (5 and 8 months) considered time to diagnosis as long; all those describing their pathway as short had delays exceeding one year. Reasons for perceptions of the time reflected multiple themes-personal (eg, psychological overwhelm, financial) and systemic (eg, provider communications, community resources). Conclusions This study revealed a disconnect between subjective perceptions and objective diagnostic timelines. The finding that patients with the shortest diagnostic delays perceived their pathway as long underscores that absolute time is not the sole determinant of patient experiences. Additionally, we found participants on both sides identified similar factors (eg, perception of provider communication) but had contrasting experiences (eg, open communication versus not feeling “listened to”) influencing perceptions of time. Identified themes of reasons for timeliness revealed areas for interventions (eg, patient-provider communication) to improve experiences and perceptions of delay. A larger scale study investigating links between symptoms (such as dyspareunia) and perception of time to diagnosis could inform risk stratification tools. By identifying patients at highest risk of perceiving harmful diagnostic delay, providers can prioritize evaluation and earlier intervention. Disclosure No.