Patient-Defined Experience in Venous-Origin Chronic Pelvic Pain: Conceptual Foundation for a Disease-Specific Patient-Reported Outcome Measure.

PURPOSE: To characterize the symptoms, daily life impacts, and patient-defined meaningful treatment benefits of women with venous-origin chronic pelvic pain (VO-CPP), and to establish the conceptual basis for a disease-specific patient-reported outcome measure (PROM).

MATERIALS AND

METHODS

Twenty-one adult women with gynecologic pain specialist-confirmed VO-CPP underwent semi-structured concept elicitation interviews at seven U.S.

CENTERS: Interviews explored symptoms, daily life impacts, and patient-defined meaningful treatment benefits. Transcripts were analyzed using thematic analysis to develop a patient-centered conceptual model.

RESULTS

No new impact concepts emerged after five interviews and no new symptom concepts after sixteen; five additional interviews confirmed saturation of symptom and impact concepts. Participants reported a broad symptom burden, with 76% describing ≥10 symptoms, and all reported impacts across at least three daily life domains. Although pelvic pain reduction was the most frequently identified meaningful treatment benefit, participants consistently defined meaningful improvement as restoration of daily functioning and valued activities rather than pain reduction alone.

CONCLUSION

Women with VO-CPP experience a multidimensional disease burden extending well beyond pain intensity alone. Treatment outcomes assessment should incorporate patient-defined symptoms, daily life impacts, and meaningful benefits. These findings provide a patient-centered conceptual foundation for development of a VO-CPP PROM.