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.

中文翻译：

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参与者和临床医生报告的完全雄激素不敏感性综合症患者手术后的长期结局

研究目的

通过参与者和观察者对解剖和功能结果的满意程度来评估生殖器手术的结果。

设计与设置

2014-2015年，在6个欧洲国家/地区的14家诊所进行了多中心横断面研究。

参加者

71名患有完全雄激素不敏感综合症（≥16岁）的人。

干预措施

临床报告文件中的数据，可选的妇科检查，患者报告的手术干预结局，对手术后的外观和功能的满意度以及手术过程对生活的影响。

主要观察指标

根据不同的手术治疗方法计算结局。线性回归模型用于与阴道满意度的关联。

结果

六十三名参与者接受了手术：62例性腺切除术，12例有或没有阴道扩张术的阴道手术，仅9例阴道扩张术和2例乳房增大。超过一半的参与者参加了妇科检查。没有（60 mm）和（67 mm）阴道成形术和/或阴道扩张的阴道长度相似。参与者和观察者报告的生殖器外观普遍令人满意。性骚扰（性交时/性交后疼痛或流血）很常见。总体而言，阴道满意度与性生活满意度密切相关，而阴道干预和手术次数则不然。许多参与者报告了性腺切除术对其生活的负面影响。

结论

尽管有良好的生殖器外观，但在不同的非手术和手术方案中仍普遍报告了功能性问题。患者报告的结果应在手术之前和之后进行评估。由于对生命的负面影响和恶性风险低，应将性腺切除术推迟至成年并定期随访。