Masculinizing surgery in disorders/differences of sex development: clinician‐ and participant‐evaluated appearance and function. (31st March 2021)

• Record Type: Journal Article
• Authors: van de Grift, Tim C.; Rapp, Marion; Holmdahl, Gundela; Duranteau, Lise; Nordenskjold, Agneta
• Other Names: Kohler Birgit investigator.; Neumann Uta investigator.; Cohen‐Kettenis Peggy investigator.; Kreukels Baudewijntje investigator.; de Vries Annelou investigator.; Arlt Wiebke investigator.; Wiesemann Claudia investigator.; Slowikowska‐Hilczer Jolanta investigator.; Thyen Ute investigator.; Rapp Marion investigator.; de la Perriere Aude Brac investigator.; Sultan Charles investigator.; Paris Francoise investigator.; Reisch Nicole investigator.; Richter‐Unruh Annette investigator.; Claahsen–van der Grinten Hedi investigator.; Bouvattier Claire investigator.; Duranteau Lise investigator.; Nordenström Anna investigator.; Nordenskjöld Agneta investigator.; Pienkowski Catherine investigator.; Szarras‐Czapnik Maria investigator.
• Is Part Of: BJU international. Volume 129:Number 3(2022)
• Page Start: 394
• Page End: 405
• Publication Date: 2021-03-31
• Subjects: disorders of sex development -- masculinizing surgery -- urological outcome -- sexual outcome -- hypospadias -- patient‐reported outcome -- #Urology; Genitourinary organs -- Diseases -- Periodicals; Genitourinary organs -- Surgery -- Periodicals; Urology -- Periodicals; 616.6
• DOI: 10.1111/bju.15369
• Languages: English
• ISSNs: 1464-4096

Abstract

Abstract : Objectives: To report the long‐term follow‐up outcomes of masculinizing surgery in disorders/differences of sex development (DSD), including both physicians' and patients' perspectives on appearance and functional outcome, including sexuality. Patients and Methods: In total, 1040 adolescents (age ≥16 years) and adults with a DSD took part in this multicentre cross‐sectional clinical study in six European countries in 2014/2015. Of those, 150 living in other than the female gender had some kind of masculinizing surgery: hypospadias repair, orchidopexy, breast reduction and/or gonadectomy. The study protocol included medical data collection, an optional genital examination, and patient‐reported outcomes including satisfaction with appearance and current sexual functioning. Results: Diagnoses included partial and mixed gonadal dysgenesis (45, XO/46, XY; n = 38), Klinefelter syndrome/46, XX males ( n = 57), and various 46, XY DSDs ( n = 42; e.g. partial androgen insensitivity syndrome, severe hypospadias) and 13 with other diagnoses. Of the participants, 84 underwent hypospadias surgery, 86 orchidopexy, 52 gonadectomy and 32 breast reduction (combinations possible). Physicians evaluated anatomical appearance at genital examination as poor in approximately 11% of patients. After hypospadias surgery, 38% of participants reported that they were (very) dissatisfied with anatomical appearance and 20% with function. The physician and patient evaluations were moderately correlated ( r = 0.43). Conclusion: The majority of participants were neutral to satisfied with the appearance and function in the long‐term after masculinizing surgery. Given the initial severe phenotype and a risk of unsatisfactory results after masculinizing surgery in DSD, treatment should be handled by experienced multidisciplinary teams in order to optimize the postoperative results.