TY - JOUR
T1 - Participant- and Clinician-Reported Long-Term Outcomes After Surgery in Individuals with Complete Androgen Insensitivity Syndrome
AU - dsd-LIFE Group
AU - Duranteau, Lise
AU - Rapp, Marion
AU - van de Grift, Tim C.
AU - Hirschberg, Angelica L.
AU - Nordenskjöld, Agneta
N1 - Funding Information:
dsd-LIFE was funded by the European Seventh Framework Programme ( FP7/2007-2013 ) under grant agreement n°305373. 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. The authors are grateful to the persons who participated in dsd-LIFE and to all of the study centers for their enthusiasm and dedication to contacting potential participants and collecting high-quality data. We especially thank the support groups in the different countries that have supported the study. For an overview of all contributors we refer to our study protocol by Röhle and colleagues. 19 We publish this report in memoriam and with the greatest thanks to PD Dr Birgit Ko¨hler (Charité Universita¨tsmedizin, Berlin), the principle investigator of the European consortium dsd-LIFE, deceased in March 2019. We honor Birgit Ko¨hler's dedicated leadership, energy, and enthusiasm for the dsd-LIFE project and her promotion of collaboration of clinicians, patients, and support groups—to improve clinical care for individuals with differences and DSD.
Funding Information:
dsd-LIFE was funded by the European Seventh Framework Programme (FP7/2007-2013) under grant agreement n?305373. 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. The authors are grateful to the persons who participated in dsd-LIFE and to all of the study centers for their enthusiasm and dedication to contacting potential participants and collecting high-quality data. We especially thank the support groups in the different countries that have supported the study. For an overview of all contributors we refer to our study protocol by R?hle and colleagues.19 We publish this report in memoriam and with the greatest thanks to PD Dr Birgit Ko?hler (Charite? Universita?tsmedizin, Berlin), the principle investigator of the European consortium dsd-LIFE, deceased in March 2019. We honor Birgit Ko?hler's dedicated leadership, energy, and enthusiasm for the dsd-LIFE project and her promotion of collaboration of clinicians, patients, and support groups?to improve clinical care for individuals with differences and DSD.
Publisher Copyright:
© 2020 North American Society for Pediatric and Adolescent Gynecology
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/4
Y1 - 2021/4
N2 - Study Objective: To evaluate the outcomes of genital surgery through participant's and observer's satisfaction with the anatomical and functional result. Design and Setting: Multicenter cross-sectional study in 14 clinics in 6 European countries in 2014-2015. Participants: Seventy-one individuals with complete androgen insensitivity syndrome (≥16 years old). Interventions: Data from clinical report files, an optional gynecological examination, patient-reported outcomes on received surgical interventions, satisfaction with appearance and function after surgery, and effect of the surgical procedure on life. Main Outcome Measures: Outcomes were calculated per different surgical treatments. Linear regression models were used for associations with vaginal satisfaction. Results: Sixty-three participants had received surgery: 62 gonadectomies, 12 vaginal surgeries with or without vaginal dilations, 9 vaginal dilations only, and 2 breast enlargements. More than half of the participants took part in the gynecological examination. Vaginal length was similar in those without (60 mm) and with (67 mm) vaginoplasty and/or vaginal dilations. Participant- and observer-reported appearance of the genitals were generally satisfactory to good. Sexual complaints (pain or bleeding during/after intercourse) were common. Vaginal satisfaction was strongly associated with satisfaction with sex life in general, whereas vaginal interventions and number of surgeries were not. Many participants reported a negative effect of gonadectomy on their life. Conclusion: Despite good genital appearance, functional problems are commonly reported, across the different nonsurgical and surgical regimens. Patient-reported outcomes should be evaluated before and after surgical procedures. Because of the negative effect on life and the low risk of malignancy, gonadectomy should be deferred to adulthood with regular follow-up.
AB - Study Objective: To evaluate the outcomes of genital surgery through participant's and observer's satisfaction with the anatomical and functional result. Design and Setting: Multicenter cross-sectional study in 14 clinics in 6 European countries in 2014-2015. Participants: Seventy-one individuals with complete androgen insensitivity syndrome (≥16 years old). Interventions: Data from clinical report files, an optional gynecological examination, patient-reported outcomes on received surgical interventions, satisfaction with appearance and function after surgery, and effect of the surgical procedure on life. Main Outcome Measures: Outcomes were calculated per different surgical treatments. Linear regression models were used for associations with vaginal satisfaction. Results: Sixty-three participants had received surgery: 62 gonadectomies, 12 vaginal surgeries with or without vaginal dilations, 9 vaginal dilations only, and 2 breast enlargements. More than half of the participants took part in the gynecological examination. Vaginal length was similar in those without (60 mm) and with (67 mm) vaginoplasty and/or vaginal dilations. Participant- and observer-reported appearance of the genitals were generally satisfactory to good. Sexual complaints (pain or bleeding during/after intercourse) were common. Vaginal satisfaction was strongly associated with satisfaction with sex life in general, whereas vaginal interventions and number of surgeries were not. Many participants reported a negative effect of gonadectomy on their life. Conclusion: Despite good genital appearance, functional problems are commonly reported, across the different nonsurgical and surgical regimens. Patient-reported outcomes should be evaluated before and after surgical procedures. Because of the negative effect on life and the low risk of malignancy, gonadectomy should be deferred to adulthood with regular follow-up.
UR - http://www.scopus.com/inward/record.url?scp=85099394278&partnerID=8YFLogxK
UR - https://www.mendeley.com/catalogue/bc79be81-f71b-3e44-8d27-f7393822ee5f/
U2 - 10.1016/j.jpag.2020.11.012
DO - 10.1016/j.jpag.2020.11.012
M3 - Journal articles
C2 - 33248216
AN - SCOPUS:85099394278
SN - 1083-3188
VL - 34
SP - 168
EP - 175
JO - Journal of Pediatric and Adolescent Gynecology
JF - Journal of Pediatric and Adolescent Gynecology
IS - 2
ER -
