Inquiry into women's pathways to diagnosis of endometriosis: A qualitative study protocol

Aims This protocol describes a study aiming to: (1) describe pathways and experiences of women's symptom recognition, appraisal and management of endometriosis; and (2) identify differences in pathways and experiences among a socioeconomically and racially diverse group of women. Design Descriptive qualitative study with stratified purposeful sampling. Methods Data will be collected from a minimum of 24 women with provider-presumed or surgically confirmed diagnoses across two time points. The study will recruit across socioeconomic status (SES) and race/ethnicity (non-Hispanic White, non-Hispanic Black, and Hispanic/Latina) to ensure diversity of the sample. Recruitment will occur at a large public hospital in the southeastern United States (US). Participants will be interviewed using semi-structured interview guides informed by Elder and Giele's Life Course perspective approaching women as active beings in dynamic systems shaped by: 1) their location in time and space; 2) linked lives; and 3) human agency, and 4) the time of their lives. Each woman's experiences, symptoms, and contacts with health-care systems will be mapped to trace their diagnostic pathways. Coded interviews and data will undergo within- and across-case analysis to identify similarities and differences in their experiences. Institutional review board approval was obtained June 2019. Discussion The participants' diagnostic maps will enable us to distinguish the differences in pathways and experiences between and across groups. Findings will inform the development of interventions aimed at shortening the time to diagnosis. Impact This will be the first study to compare pathways to diagnosis of endometriosis in a socioeconomically and racially diverse sample of US women using the life course perspective. The results from this research stand to inform future interventions aimed at helping women achieve more timely diagnoses.

Automated summary

This study aims to describe pathways and experiences of women's symptom recognition, appraisal, and management of endometriosis, as well as identify differences among a diverse group of women. The data collected will be used to analyze similarities and differences in experiences to inform interventions aimed at achieving more timely diagnoses for women with endometriosis. This research will be the first to compare pathways to diagnosis of endometriosis in a socioeconomically and racially diverse sample of US women.