EP24.31: Individuals' preferences for endometriosis diagnosis tests: focus group discussions with individuals diagnosed with endometriosis

Tiffany Yeretsian, Paul‐Henri Roméo, K. McGowan, Suzanne J. Dedden, Jacques W.M. Maas, Mathew Leonardi
In: Ultrasound in Obstetrics & Gynecology · 2024 · vol. 64(S1) , pp. 353 · doi:10.1002/uog.29037 · PMID:39249036 · W4402358898
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⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-09 ⓘ

Focus groups with seven endometriosis patients revealed that healthcare provider expertise, patient-physician rapport, visualization of disease, diagnostic accuracy, and risk of complications are key factors in their preferred diagnostic methods.

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This study utilized semi-structured focus group discussions with seven individuals diagnosed with endometriosis to explore their preferences regarding diagnostic testing methods. Grounded theory analysis of the transcripts revealed five primary themes influencing patient choices, including the healthcare provider's expertise, the quality of patient-physician rapport, visualization capabilities, test accuracy, and potential risks of complications. The researchers noted that these insights are intended to inform subsequent discrete choice experiments and improve clinical communication strategies. This paper is centrally about endometriosis — specifically focusing on patient perspectives and preferences for diagnostic procedures.

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Abstract

Endometriosis affects approximately 10% of reproductive-age individuals and is diagnosed through methods including anamnesis, physical examination, imaging, biomarkers, and surgery with histological assessment. As we move toward a medical culture that prioritises autonomy and patient involvement, we must consider how these principles are applicable to the diagnostic process for endometriosis. This study hopes to understand and identify existing patient preferences for endometriosis diagnosis to promote best clinical approaches and patient comfort. The development of individuals' preferences for endometriosis diagnosis tests IPEDT comprises four steps. This study concentrated on the initial step, which entailed conducting semi-structured focus group discussions with individuals diagnosed with endometriosis to ascertain their perspectives on the diagnosis process. The analysis of transcripts followed grounded theory methodology, with two authors independently coding the data. These codes were then organised into categories and themes to reflect participant perspectives. We conducted two focus groups with seven individuals, aged 26 to 56, all diagnosed with endometriosis. Through these discussions, we identified five key themes perceived as important by participants when selecting a diagnostic method for endometriosis: 1) expertise of healthcare provider (7/7 participants), 2) patient-physician rapport (7/7 participants), 3) visualization of endometriosis (3/7 participants), 4) accuracy of diagnostic test (3/7 participants), and 5) risk of complications (2/7 participants). The unique insights garnered from this study helped to further our understanding of patient preferences regarding the diagnosis of endometriosis and the level of awareness patients have about the different diagnostic methods used to diagnose endometriosis. These findings will help guide the next step of the study which involves a discreet choice experiment and will help to educate physicians in best practices to follow in their clinics based on the patient experience.
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Objectives

Endometriosis affects approximately 10% of reproductive-age individuals and is diagnosed through methods including anamnesis, physical examination, imaging, biomarkers, and surgery with histological assessment. As we move toward a medical culture that prioritises autonomy and patient involvement, we must consider how these principles are applicable to the diagnostic process for endometriosis. This study hopes to understand and identify existing patient preferences for endometriosis diagnosis to promote best clinical approaches and patient comfort.

Methods

The development of individuals' preferences for endometriosis diagnosis tests IPEDT comprises four steps. This study concentrated on the initial step, which entailed conducting semi-structured focus group discussions with individuals diagnosed with endometriosis to ascertain their perspectives on the diagnosis process. The analysis of transcripts followed grounded theory methodology, with two authors independently coding the data. These codes were then organised into categories and themes to reflect participant perspectives.

Results

We conducted two focus groups with seven individuals, aged 26 to 56, all diagnosed with endometriosis. Through these discussions, we identified five key themes perceived as important by participants when selecting a diagnostic method for endometriosis: 1) expertise of healthcare provider (7/7 participants), 2) patient-physician rapport (7/7 participants), 3) visualization of endometriosis (3/7 participants), 4) accuracy of diagnostic test (3/7 participants), and 5) risk of complications (2/7 participants).

Conclusions

The unique insights garnered from this study helped to further our understanding of patient preferences regarding the diagnosis of endometriosis and the level of awareness patients have about the different diagnostic methods used to diagnose endometriosis. These findings will help guide the next step of the study which involves a discreet choice experiment and will help to educate physicians in best practices to follow in their clinics based on the patient experience.

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endometriosis

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