Transgender and non-binary (TGNB) individuals often experience gender dysphoria. TGNB individuals with gender dysphoria may undergo genital gender-affirming surgery including vaginoplasty, phalloplasty, or metoidioplasty so that their genitourinary anatomy is congruent with their experienced gender. Given decreasing social stigma and increasing coverage from private and public payers, there has been a rapid increase in genital gender-affirming surgery in the past few years. As the incidence of genital gender-affirming surgery increases, a concurrent increase in the development and utilization of patient reported outcome measurement tools is critical. To date, there is no systematic way to assess and measure patients’ perspectives on their surgeries nor is there a validated measure to capture patient reported outcomes for TGNB individuals undergoing genital gender-affirming surgery. Without a systematic way to assess and measure patients’ perspectives on their care, there may be fragmentation of care. This fragmentation may result in challenges to ensure patients’ goals are at the forefront of shared- decision making. As we aim to increase access to surgical care for TGNB individuals, it is important to ensure this care is patient-centered and high-quality. The development of patient-reported outcomes for patients undergoing genital gender-affirming surgery is the first step in ensuring high quality patient-centered care. Herein, we discuss the critical need for development of validated patient reported outcome measures for transgender and non-binary patients undergoing genital reconstruction. We also propose a model of patient-engaged patient reported outcome measure development.
Background Many patients have goals related to sexual health when seeking gender-affirming vaginoplasty, and previous investigations have only studied the ability to orgasm at cross-sectional timepoints. Aim Our aim is to quantify the time to orgasm postoperative gender-affirming vaginoplasty and describe potential correlative factors, including preoperative orgasm, to improve preoperative counseling. Methods A retrospective chart review was utilized to extract factors thought to influence pre and postoperative orgasm in patients undergoing robotic peritoneal flap vaginoplasty. Mean days to orgasm plus one standard deviation above that mean was used to define the time at which patients would be considered anorgasmic. Outcomes Orgasm was documented as a categorical variable on the basis of surgeon interviews during pre and postoperative appointments while time to orgasm was measured as days from surgery to first date documented as orgasmic in the medical record. Results A total of 199 patients underwent surgery from September 2017 to August 2020. The median time to orgasm was 180 days. 178 patients had completed 1 year or greater of follow-up, and of these patients, 153 (86%) were orgasmic and 25 patients (14%) were not. Difficulty in preoperative orgasm was correlated only with older age (median age 45.9 years vs 31.7, P = .03). Postoperative orgasm was not significantly correlated with preoperative orgasm. The only factor related to postoperative orgasm was smoking history: 12 of 55 patients (21.8%) who had a positive smoking history and sufficient follow-up reported anorgasmia (P-value .046). Interventions for anorgasmic patients include testosterone replacement, pelvic floor physical therapy, and psychotherapy. Clinical Implications Preoperative difficulty with orgasm improves with gender-affirming robotic peritoneal flap vaginoplasty, while smoking had a negative impact on postoperative orgasm recovery despite negative cotinine test prior to surgery. Strengths & Limitations This investigation is the first effort to determine a timeline for the return of orgasmic function after gender-affirming vaginoplasty. It is limited by retrospective review methodology and lack of long-term follow-up. The association of smoking with postoperative orgasm despite universal nicotine cessation prior to surgery may indicate prolonged smoking cessation improves orgasmic outcomes or that underlying, unmeasured exposures correlated with smoking may be the factor inhibiting recovery of orgasm. Conclusion The majority of patients were orgasmic at their 6-month follow-up appointments, however, patients continued to become newly orgasmic in appreciable numbers more than 1 year after surgery.
INTRODUCTION AND OBJECTIVE: Penoscrotal Paget's disease is a rare type of intraepithelial adenocarcinoma. Postsurgical reconstruction is a major challenge for surgeons. In this study, we evaluated the surgical outcomes after reconstruction surgery in patients with penoscrotal Paget's disease and proposed a novel strategy.METHODS: In this study, patients with penoscrotal Paget's disease who were referred to Shanghai Ninth People's Hospital Affiliated to Shanghai Jiao Tong University School of Medicine between May 2004 and February 2021, were included. We proposed a three-step Perineal Reconstruction (PR) strategy to describe the location and extent of the defect and provide a reconstructive surgical method. Accordingly, all the postsurgical defects were reconstructed based on our strategy. The clinical data and outcomes during the follow-up were recorded and analyzed.RESULTS: Patients were 42e91 years old with a diagnostic delay of 2e201 months. Further, most patients had large defects, thin tumors, and erythematous plaques. All patients underwent frozen biopsy-guided wide local excision and lymph node biopsy or dissection. Further, 16 patients underwent re-excision with positive margins. According to the PR strategy, 54, 41, 58, and 80 of the patients underwent primary closure, skin grafting, flap coverage, or skin grafting combined with flap coverage, respectively. Three patients underwent multimodal treatment. The results showed no obvious difference between preoperative and postoperative sexual satisfaction. The follow-up time ranged from 9 to 210 months. Further, 3 patients died from metastasis and 10 patients died from other cancers, natural death, or other reasons.CONCLUSIONS: Wide local excision achieves a relatively low recurrence rate and preserves sexual function in patients with penoscrotal Paget's disease. The PR strategy is a promising method to assess defects and guide reconstruction.
INTRODUCTION AND OBJECTIVE: Penoscrotal Paget's disease is a rare type of intraepithelial adenocarcinoma. Postsurgical reconstruction is a major challenge for surgeons. In this study, we evaluated the surgical outcomes after reconstruction surgery in patients with penoscrotal Paget's disease and proposed a novel strategy.METHODS: In this study, patients with penoscrotal Paget's disease who were referred to Shanghai Ninth People's Hospital Affiliated to Shanghai Jiao Tong University School of Medicine between May 2004 and February 2021, were included. We proposed a three-step Perineal Reconstruction (PR) strategy to describe the location and extent of the defect and provide a reconstructive surgical method. Accordingly, all the postsurgical defects were reconstructed based on our strategy. The clinical data and outcomes during the follow-up were recorded and analyzed.RESULTS: Patients were 42e91 years old with a diagnostic delay of 2e201 months. Further, most patients had large defects, thin tumors, and erythematous plaques. All patients underwent frozen biopsy-guided wide local excision and lymph node biopsy or dissection. Further, 16 patients underwent re-excision with positive margins. According to the PR strategy, 54, 41, 58, and 80 of the patients underwent primary closure, skin grafting, flap coverage, or skin grafting combined with flap coverage, respectively. Three patients underwent multimodal treatment. The results showed no obvious difference between preoperative and postoperative sexual satisfaction. The follow-up time ranged from 9 to 210 months. Further, 3 patients died from metastasis and 10 patients died from other cancers, natural death, or other reasons.CONCLUSIONS: Wide local excision achieves a relatively low recurrence rate and preserves sexual function in patients with penoscrotal Paget's disease. The PR strategy is a promising method to assess defects and guide reconstruction.
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