Study Reports Near-Zero Regret After Mastectomy — But 41% Didn't Respond and 13 High-Regret Answers Were Excluded

Long-Term Regret and Satisfaction With Decision Following Gender-Affirming Mastectomy

Authors: Lauren Bruce, Alexander N. Khouri, Andrew Bolze, Maria Ibarra, Blair Richards, Shokoufeh Khalatbari, Gaines Blasdel, Jennifer B. Hamill, Jessica J. Hsu, Edwin G. Wilkins, Shane D. Morrison, Megan Lane
Journal: JAMA Surgery
Year: 2023
Source: https://doi.org/10.1001/jamasurg.2023.3352

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 people who had gender-related breast removal at one US university hospital between 1990 and February 2020 were eligible, and 139 (59%) answered the survey.
The typical patient was 27 at surgery, and the typical time since surgery for those who answered was 3.6 years (ranging from 2 to almost 24 years).
The typical answer showed the highest possible satisfaction and zero regret; the average regret score was 4 out of 100.
Thirteen people gave very high regret scores (95 to 100 out of 100) while also saying they were satisfied, and the authors left them out, assuming they had filled in the survey wrongly.
People who did not reply had been out of surgery longer (typically 4.6 vs 3.6 years) and were less often recorded with depression (44% vs 68%) or anxiety (44% vs 70%).
About 1 in 5 who answered (27 people, 19%) now described their gender differently than at the time of surgery; their typical regret score was also zero.
No one, whether they answered or not, had asked for or had a reversal operation at this hospital.

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.")

Methodological limitations

Many people did not reply: 96 of 235 eligible patients (41%) did not answer, so we do not know if they regret it. People with regret may be less likely to answer a survey sent by the team that operated on them.
Non-repliers had been out of surgery longer: Those who did not reply typically had surgery 4.6 years earlier, versus 3.6 for those who did. Regret tends to grow over time, so the people most likely to regret it were the ones missing.
High-regret answers thrown out: 13 people (about 9% of those who answered) scored 95–100 out of 100 for regret and were left out as presumed mistakes, because they also said they were satisfied. If even some of these were genuine, regret would be noticeably higher than reported.
Short follow-up: Despite "long-term" in the title, the typical time since surgery was 3.6 years. Detransition and requests for reversal often come 4 to 10 or more years after treatment.
Questionnaires not made for this surgery: Both scales were designed for decisions like menopause hormone treatment or cancer care. Nearly everyone scored at the extreme end, so the authors could not look at who was more likely to regret it, and they call for better tools themselves.
Only reversals at this hospital counted: Breast rebuilding done elsewhere was not captured, so "no reversals" only means none the hospital knew about.
One-time survey relying on memory: A single snapshot cannot show how regret changes over time, and it depends on people looking back on their decision.
One hospital, adults only: Everyone met standard surgical criteria at one university hospital and was an adult (typically 27 at surgery), so the results do not apply to minors or to other clinics.
Surgeons studying their own work: The surgeons who do these operations designed and ran the study, partly funded by a plastic surgery foundation, and patients were surveyed by their own surgical team.
Conclusion goes further than the data: The authors say their results "affirm the overwhelmingly low levels of regret" after gender surgery in general. That is a much bigger claim than a survey of one operation at one hospital, with 59% replying, can support.

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Summary

Key findings

Abstract

Conclusion