1. Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia
- Author
-
Rebecca E.H. Ellens, Amy B. Wisniewski, Allyson Fried, Theresa Meyer, Saul P. Greenfield, Yegappan Lakshmanan, Yee-Ming Chan, Denise Galan, Kristy J. Scott Reyes, David A. Diamond, Blake W. Palmer, Cortney Wolfe-Christensen, Amy C. Tishelman, Elizabeth B. Yerkes, Kerlly J. Bernabé, John M. Chaney, Natalie J. Nokoff, Christina M. Sharkey, Sabrina Meyer, Alethea Paradis, Alexandria M. Delozier, Larry L. Mullins, Thomas F. Kolon, Earl Y. Cheng, Bradley P. Kropp, Dana M. Bakula, Laurence S. Baskin, Dix P. Poppas, and Paul F. Austin
- Subjects
Adult ,Male ,Parents ,Endocrinology, Diabetes and Metabolism ,Disorders of Sex Development ,030232 urology & nephrology ,Anxiety ,Severity of Illness Index ,Article ,03 medical and health sciences ,0302 clinical medicine ,Endocrinology ,Risk Factors ,Surveys and Questionnaires ,030225 pediatrics ,Severity of illness ,medicine ,Humans ,Disorders of sex development ,business.industry ,medicine.disease ,Ambiguous genitalia ,Caregivers ,Parental anxiety ,Pediatrics, Perinatology and Child Health ,Quality of Life ,Etiology ,Positive relationship ,Female ,Perception ,Genitoplasty ,medicine.symptom ,business ,Clinical psychology - Abstract
Background/Aims: Parents of children born with disorders of sex development (DSD) often experience anxiety, but risk factors, including parental perception of the severity of their child’s DSD, have not been examined. We hypothesized that severity of illness (SOI) ratings would relate to parental anxiety, and would be higher for parents of children with a potentially life-threatening DSD (e.g., 21-hydroxylase deficiency). Methods: Eighty-nine parents (Mage = 33.0, 56.2% mothers) of 51 children (Mage in months = 8.7) with a DSD including ambiguous genitalia were recruited from 12 specialized DSD clinics. Parents completed questionnaires prior to genitoplasty, 6 months post-genitoplasty, and 12 months post-genitoplasty (if completed). Data were analyzed with linear mixed modeling. Results: Parental anxiety decreased over time, χ2(1) = 10.14, p < 0.01. A positive relationship between SOI and anxiety was found, with SOI being a strong predictor of anxiety (b = 0.53, p < 0.01; χ2[1] = 5.33, p < 0.05). An SOI by time interaction indicated SOI had an increasing effect on anxiety over time, b = 0.06, p < 0.05; χ2(1) = 6.30, p < 0.05. There was no diagnosis by SOI interaction. Conclusion: Parental anxiety decreased over time, but those with higher SOI ratings reported greater initial anxiety followed by slower resolution over time. Underlying etiology of DSD had no effect on the relationship between SOI and anxiety.
- Published
- 2018
- Full Text
- View/download PDF