Summary

Surgeons at the University of Michigan surveyed adults who had breast removal (mastectomy) as gender surgery at their hospital at least two years earlier. 139 of 235 eligible patients (59%) replied. The typical answers showed full satisfaction and no regret, and nobody had asked the hospital to rebuild their breasts. The authors say this confirms regret is very low. But 41% did not reply, and they had been out of surgery longer, which is when regret is more likely to show up. Thirteen people who scored very high for regret were left out, because the authors assumed they had misunderstood the questions. Typical follow-up was only 3.6 years, and the questionnaires were made for other medical decisions. The study suggests most people who answered were satisfied, but it cannot rule out real regret in the wider group.

Key findings

• 235 άτομα που είχαν αφαιρέσει τους μαστούς για λόγους φύλου σε ένα πανεπιστημιακό νοσοκομείο των ΗΠΑ μεταξύ 1990 και Φεβρουαρίου 2020 ήταν επιλέξιμα και 139 (59%) απάντησαν στην έρευνα.
• Ο τυπικός ασθενής ήταν 27 ετών κατά την επέμβαση και ο τυπικός χρόνος από την επέμβαση για όσους απάντησαν ήταν 3,6 χρόνια (από 2 έως σχεδόν 24 χρόνια).
• Η τυπική απάντηση έδειχνε τη μέγιστη δυνατή ικανοποίηση και μηδενική μεταμέλεια· η μέση βαθμολογία μεταμέλειας ήταν 4 στα 100.
• Δεκατρία άτομα έδωσαν πολύ υψηλές βαθμολογίες μεταμέλειας (95 έως 100 στα 100) ενώ δήλωναν επίσης ικανοποιημένα και οι συγγραφείς τα άφησαν εκτός, υποθέτοντας ότι είχαν συμπληρώσει λανθασμένα την έρευνα.
• Όσοι δεν απάντησαν είχαν περάσει περισσότερο χρόνο από την επέμβαση (τυπικά 4,6 έναντι 3,6 χρόνια) και είχαν λιγότερο συχνά καταγεγραμμένη κατάθλιψη (44% έναντι 68%) ή άγχος (44% έναντι 70%).
• Περίπου 1 στους 5 που απάντησαν (27 άτομα, 19%) περιέγραφε τώρα το φύλο του διαφορετικά από τη στιγμή της επέμβασης· η τυπική βαθμολογία μεταμέλειάς τους ήταν επίσης μηδέν.
• Κανείς, είτε απάντησε είτε όχι, δεν είχε ζητήσει ή υποβληθεί σε επέμβαση αναστροφής σε αυτό το νοσοκομείο.

Abstract

IMPORTANCE: There has been increasing legislative interest in regulating gender-affirming surgery, in part due to the concern about decisional regret. The regret rate following gender-affirming surgery is thought to be approximately 1%; however, previous studies relied heavily on ad hoc instruments.

OBJECTIVE: To evaluate long-term decisional regret and satisfaction with decision using validated instruments following gender-affirming mastectomy.

DESIGN, SETTING, AND PARTICIPANTS: For this cross-sectional study, a survey of patient-reported outcomes was sent between February 1 and July 31, 2022, to patients who had undergone gender-affirming mastectomy at a US tertiary referral center between January 1, 1990, and February 29, 2020.

EXPOSURE: Decisional regret and satisfaction with decision to undergo gender-affirming mastectomy.

MAIN OUTCOMES AND MEASURES: Long-term patient-reported outcomes, including the Holmes-Rovner Satisfaction With Decision scale, the Decision Regret Scale, and demographic characteristics, were collected. Additional information was collected via medical record review. Descriptive statistics and univariable analysis using Fisher exact and Wilcoxon rank sum tests were performed to compare responders and nonresponders.

RESULTS: A total of 235 patients were deemed eligible for the study, and 139 responded (59.1% response rate). Median age at the time of surgery was 27.1 (IQR, 23.0-33.4) years for responders and 26.4 (IQR, 23.1-32.7) years for nonresponders. Nonresponders (n = 96) had a longer postoperative follow-up period than responders (median follow-up, 4.6 [IQR, 3.1-8.6] vs 3.6 [IQR, 2.7-5.3] years, respectively; P = .002). Nonresponders vs responders also had lower rates of depression (42 [44%] vs 94 [68%]; P < .001) and anxiety (42 [44%] vs 97 [70%]; P < .001). No responders or nonresponders requested or underwent a reversal procedure. The median Satisfaction With Decision Scale score was 5.0 (IQR, 5.0-5.0) on a 5-point scale, with higher scores noting higher satisfaction. The median Decision Regret Scale score was 0.0 (IQR, 0.0-0.0) on a 100-point scale, with lower scores noting lower levels of regret. A univariable regression analysis could not be performed to identify characteristics associated with low satisfaction with decision or high decisional regret due to the lack of variation in these responses.

CONCLUSIONS AND RELEVANCE: In this cross-sectional survey study, the results of validated survey instruments indicated low rates of decisional regret and high levels of satisfaction with decision following gender-affirming mastectomy. The lack of dissatisfaction and regret impeded the ability to perform a more complex statistical analysis, highlighting the need for condition-specific instruments to assess decisional regret and satisfaction with decision following gender-affirming surgery.

Conclusion

In this cross-sectional survey study, the results of validated survey instruments indicated low rates of decisional regret and high levels of satisfaction with decision following gender-affirming mastectomy. The lack of dissatisfaction and regret impeded the ability to perform a more complex statistical analysis, highlighting the need for condition-specific instruments to assess decisional regret and satisfaction with decision following gender-affirming surgery. (Discussion: "While prospective, multicenter work is needed, these results are consistent with previous ad hoc studies and affirm the overwhelmingly low levels of regret following gender-affirming surgery.")