Decisional Regret Among Caregivers of Infants with Differences of Sex Development Reared as Male.
Rachel S Fisher, Taylor M Datillo, Laurence S Baskin and 7 others
PMID 36729523WHAT IT FOUND
In 39 caregivers of infants with severe genital differences reared male, two-thirds reported no regret about first medical decisions.
One-third reported mild or moderate to severe regret, and no measured factor was linked to regret.
Key findings
01Of 39 caregivers, 26 reported no decisional regret, 12 reported mild regret, and 1 reported moderate to severe regret.
02Among 21 caregivers who wrote about the decision behind their regret score, 16 referred to genital surgery.
03Exploratory analyses found no demographic, medical, or illness uncertainty correlates of caregiver decisional regret.
STILL TO COME
How it was doneWhat they found
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What it does not show
The sample was small, with 39 caregivers, so the study had limited power to detect predictors. Parent ratings for the same child agreed poorly, and the study could not account for family-level variability with multi-level models. Only caregivers who completed the regret measure were analysed, and missing data came from lost follow-up, withdrawal, or site delays. The analysed subgroup had fewer surgical complications than the larger sample, 35% versus 41%, so regret rates may differ in the full sample. Caregivers were mostly white and relatively affluent, so the results may not apply to more diverse families. The study assessed short-term caregiver regret, not the child's later view of genitoplasty. Written responses were used instead of interviews, so the decision-making process was not richly characterized. The study did not assess how parents weighed functional and cosmetic outcomes of surgery. The illness uncertainty measure may not be fully adapted for DSD terminology.
Declared interests
The supplied metadata lists NIH extramural and non-U.S. government research support. No author conflict declaration is included in the supplied text.
The easy way to misread this
Do not read the one-third regret rate as evidence that infant genitoplasty caused lasting harm. The study measured caregiver regret 6 to 12 months after enrollment, included only 39 caregivers, and found no significant predictors.