Patient-centered priorities in endometriosis and chronic pelvic pain: A mixed-methods and thematic analysis of intake narratives

Shay M. Freger, Narges Kalani, Navid Kalani, Monica Cornea, S. Cavalier, Serena Cavalier, Mathew Leonardi
Acta obstetricia et gynecologica Scandinavica · 2025 · vol. 105(2) , pp. 356–367 · doi:10.1111/aogs.70096 · PMID:41400460 · PMC12856722 · W4417386357
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This mixed-methods study analyzed patient narratives from 649 referred individuals, revealing key care priorities including pain management, diagnostic clarity, fertility, function restoration, and knowledge seeking, which varied by age and endometriosis phenotype.

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Abstract

INTRODUCTION: Understanding what patients prioritize when seeking care for endometriosis and chronic pelvic pain (CPP) is crucial for delivering personalized, responsive care. However, patient-defined goals remain poorly characterized across various life stages and disease phenotypes. This study aimed to explore and rank patient priorities at the time of tertiary referral to inform patient-centered care models. MATERIAL AND METHODS: We conducted a convergent mixed-methods study of 649 new patients referred to a tertiary endometriosis center between 2021 and 2024. Participants completed a standardized intake form including two open-ended questions on their goals and reasons for seeking care. Qualitative data were analyzed using codebook thematic analysis, generating five overarching themes and 20 subthemes. Frequencies of coded themes were descriptively compared across age groups and ultrasound-confirmed endometriosis phenotypes. Quantitative data were analyzed using descriptive statistics, with subgroup comparisons based on age (18-24, 25-34, 35-44, 45-54, 55+) and phenotype (superficial, ovarian, deep, combined). The primary outcome was the ranked frequency of care priorities by subgroup. Secondary outcomes included cross-theme variation and co-occurrence patterns. RESULTS: Five key themes emerged: (1) managing pain and symptoms across a broad spectrum; (2) pursuing diagnostic clarity and validation; (3) balancing symptom relief with fertility planning and preservation; (4) restoring daily function, relationships, and mental well-being; and (5) seeking knowledge to navigate the disease and its management. Subgroup analysis revealed that though management and diagnosis were most frequently prioritized among all groups, fertility was more frequently prioritized by participants aged 25-34 (24.1%) and those with ovarian endometriosis (27.8%), while older participants more often prioritized quality of life and education. Participants with superficial or presumptive diagnoses more commonly emphasized diagnostic clarity and frustration with fragmented care. Many participants expressed a desire for alternatives to hormonal therapy and reported feeling unheard or unsupported in prior encounters. CONCLUSIONS: Patient priorities differ meaningfully across age and endometriosis phenotype, with fertility, education, and quality of life shifting in relative importance over time. These findings support the need for personalized, life-stage-responsive models of care that adapt to evolving patient goals and integrate both medical and psychosocial domains.

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Outcome instruments

VAS-pain

Condition tags

endometriosischronic_pelvic_pain

MeSH descriptors

Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain Chronic Pain

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (38)

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