Patient-Centred Perspectives on Diagnostic Strategies for Endometriosis: A Qualitative Study
Tiffany Yeretsian1, Paola Romeo1, Shay M Freger1
1Department of Obstetrics and Gynaecology, McMaster University, Hamilton, Ontario, Canada.
Objective:
To explore diagnostic preferences among individuals with confirmed or suspected endometriosis to inform the development of patient-centred diagnostic strategies.
Design:
Qualitative study using semi-structured focus group discussions analysed with grounded theory methodology.
Setting:
A tertiary gynaecology clinic and a specialised diagnostic imaging centre in Canada. Focus group discussions were conducted by videoconference.
Population:
Twenty-five individuals aged 21-56 years with confirmed or suspected endometriosis.
Methods:
Semi-structured focus group discussions were audio recorded, transcribed verbatim, anonymised, and analysed using open, axial, and selective coding. Two researchers independently coded all transcripts, resolving discrepancies through discussion or adjudication by a third researcher. Thematic saturation guided study completion.
Main Outcome Measures:
Patient-identified themes describing diagnostic experiences, preferences, facilitators, barriers, and trade-offs.
Results:
Eight major themes were identified: (1) diagnostic challenges and delays, (2) patient advocacy and self-advocacy, (3) importance of provider expertise and trust, (4) desire for visual confirmation and tangible validation, (5) emotional and psychological impact of the diagnostic journey, (6) diagnostic preferences and risk tolerance, (7) practical and institutional needs for formal diagnosis, and (8) educational needs and knowledge gaps among healthcare professionals and health service users. Participants described weighing the benefits and limitations of non-invasive and invasive diagnostic modalities in light of symptom severity, access, and diagnostic uncertainty, with preferences varying across individuals.
Conclusion:
This study provides patient-centred insights into how individuals with confirmed or suspected endometriosis perceive and navigate the current diagnostic landscape. The findings contextualise and reinforce existing evidence on patient experiences of endometriosis diagnosis and highlight opportunities to align patient values with diagnostic strategies. These insights offer foundational direction for the subsequent development of a discrete choice experiment within the IPEDT project.
