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Multicenter Study
. 2017 Oct;198(4):914-920.
doi: 10.1016/j.juro.2017.05.035. Epub 2017 May 11.

Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty

Rebecca E H Ellens  1 , Dana M Bakula  2 , Alexandria J Mullins  2 , Kristy J Scott Reyes  3 , Paul Austin  4 , Laurence Baskin  5 , Kerlly Bernabé  6 , Earl Y Cheng  7 , Allyson Fried  8 , Dominic Frimberger  9 , Denise Galan  6 , Lynette Gonzalez  5 , Saul Greenfield  8 , Thomas Kolon  10 , Bradley Kropp  3 , Yegappan Lakshmanan  11 , Sabrina Meyer  8 , Theresa Meyer  7 , Larry L Mullins  2 , Natalie J Nokoff  12 , Blake Palmer  3 , Dix Poppas  6 , Alethea Paradis  4 , Elizabeth Yerkes  7 , Amy B Wisniewski  3 , Cortney Wolfe-Christensen  13
Affiliations
Multicenter Study

Psychological Adjustment of Parents of Children Born with Atypical Genitalia 1 Year after Genitoplasty

Rebecca E H Ellens et al. J Urol. 2017 Oct.

Abstract

Purpose: We examined the psychological adjustment of parents of children born with moderate to severe genital atypia 12 months after their child underwent genitoplasty.

Materials and methods: Parents were recruited longitudinally from a multicenter collaboration of 10 pediatric hospitals with specialty care for children with disorders/differences of sex development and/or congenital adrenal hyperplasia. Parents completed measures of depressive and anxious symptoms, illness uncertainty, quality of life, posttraumatic stress and decisional regret.

Results: Compared to levels of distress at baseline (before genitoplasty) and 6 months after genitoplasty, data from 25 mothers and 20 fathers indicated significant improvements in all psychological distress variables. However, a subset of parents continued endorsing clinically relevant distress. Some level of decisional regret was endorsed by 28% of parents, although the specific decision that caused regret was not specified.

Conclusions: Overall the majority of parents were coping well 1 year after their child underwent genitoplasty. Level of decisional regret was related to having a bachelor's level of education, increased levels of illness uncertainty preoperatively and persistent illness uncertainty at 12 months after genitoplasty but was unrelated to postoperative complications.

Keywords: adjustment disorders; disorders of sex development; gender identity; genitalia; parents.

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Figures

Figure 1.
Figure 1.
Categories of severity of depressive symptoms. Post hoc comparisons reveal significant differences between baseline and 6-month followup (p = 0.001), and baseline and 12-month followup (p = 0.012). Mod-Sev, moderate to severe.
Figure 2.
Figure 2.
Categories of severity of anxious symptoms. Post hoc comparisons show significant differences between all points (baseline to 6 months, p = 0.031; 6 months to 12 months, p = 0.018; baseline to 12 months, p = 0.004). Mod-Sev, moderate to severe.
Figure 3.
Figure 3.
Categories of severity of PTSS. Post hoc comparisons demonstrate significant differences between baseline and 6 months (p = 0.001), and baseline and 12-month followup (p < 0.001).
Figure 4.
Figure 4.
Level of illness uncertainty. Post hoc comparisons reveal significant differences between baseline and 12-month followup (p = 0.022). PPUS, Parent Perception of Uncertainty Scale.
Figure 5.
Figure 5.
Categories of severity of QOL impairments
Figure 6.
Figure 6.
Comparison of level of DR between current sample and other studies., DRS, Decisional Regret Scale.
Figure 7.
Figure 7.
Comparison of parental decisional regret based on level of education. DRS, Decisional Regret Scale.
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Comment in

References

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