PROGRESS (Patient-Reported Outcomes in Genital Reconstructive Surgeries): A Validated Patient-Reported Outcome Measure Questionnaire to Assess Post-Operative Functional Improvement Following Feminising Genital Reconstructive Surgery

TL;DR

This study validates a questionnaire to measure outcomes after feminising genital reconstructive surgery, showing significant post-operative improvement in most domains.

Contribution

The PROGRESS questionnaire is a new validated tool for assessing post-operative outcomes in feminising genital reconstructive surgery.

Findings

The PROGRESS questionnaire showed a statistically significant 35.8% improvement in overall scores at 52 weeks post-surgery.

High Cronbach’s alpha scores confirmed reliability in four out of five domains, except for bowel function.

The questionnaire is suitable for clinical use to assess functional outcomes following feminising genital reconstructive surgery.

Abstract

Background/Objectives: Our aim was to validate a self-reported patient-reported outcome measure (PROM) questionnaire for use by patients undergoing feminising genital reconstructive surgery (fGRS). Methods: We used the Patient Reported Outcomes in Genital REconstructive SurgerieS (PROGRESS) questionnaire to examine key domains: urinary function, sexual function, cosmetic appearance, bowel function, and general health and wellbeing, which were identified as key components by our experienced surgeons. A reduction in score post-operatively represented an improvement in symptoms. Internal consistency was performed to determine the reliability of the questionnaire. Results: Between 2014 and 2024, 117 patients had completed pre- and post-operative questionnaires by week 52. The overall median score for all domains was 0.37 (interquartile range [IQR] 0.32–0.44) at baseline. At week 52 post-surgery, it was 0.24 (IQR 0.16–0.32), with a median difference (% change in overall score) of −0.12 (−35.8%) (p < 0.001). In all domains apart from bowel function, there was a reduction in scores that achieved statistical significance. There were high Cronbach’s alpha scores at baseline and at week 52 for four out of the five domains: general health and wellbeing a = 0.71 at week 0 and a = 0.79 at week 52; sexual function a = 0.83 at week 0 and a = 0.88 at week 52; cosmetic function a = 0.64 at week 0 and a = 0.84 at week 52; urinary function a = 0.74 at week 0 and a = 0.83 at week 52. Bowel function scored poorly, with a = 0.44 at week 0 and a = 0.49 at week 52. Conclusions: The questionnaire is suitable for use in clinical practice as a standardised way to assess functional outcomes following fGRS.