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.
| Original language | English |
|---|---|
| Journal | BJU International |
| ISSN | 1464-4096 |
| DOIs | |
| Publication status | Published - 2021 |
Funding
We publish this paper in memoriam and with the greatest thanks to PD Dr Birgit Kohler (Charite Universitatsmedizin, Berlin), the principal investigator of the European Consortium dsd‐LIFE, who died in March 2019. We honour Birgit Kohler's dedicated leadership, energy and enthusiasm for the dsd‐LIFE project and her promotion of collaboration of clinicians, patients and support groups aiming to improve clinical care in DSD. dsd‐LIFE was funded by the European Union Seventh Framework Programme no. 305373 (FP7/2007–2013). The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report. The corresponding author had full access to all the data in the study and had final responsibility for the decision to submit for publication.
Research Areas and Centers
- Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)
