Literature DB >> 30566934

Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia.

Christina M Sharkey1, Dana M Bakula2, Cortney Wolfe-Christensen3,4, Paul Austin5, Laurence Baskin6, Kerlly J Bernabé7, Yee-Ming Chan8, Earl Y Cheng9, Alexandria M Delozier2, David A Diamond8, Rebecca E H Ellens4, Allyson Fried10, Denise Galan7, Saul Greenfield10, Thomas Kolon11, Bradley Kropp3, Yegappan Lakshmanan4, Sabrina Meyer10, Theresa Meyer9, Natalie J Nokoff12, Kristy J Scott Reyes3, Blake Palmer3, Dix P Poppas7, Alethea Paradis13, Amy Tishelman8, Elizabeth B Yerkes9, John M Chaney2, Amy B Wisniewski3, Larry L Mullins2.   

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.
© 2018 S. Karger AG, Basel.

Entities:  

Keywords:  Anxiety; Disorders of sex development; Psychological aspects of disorders; Severity of illness

Mesh:

Year:  2018        PMID: 30566934      PMCID: PMC6421083          DOI: 10.1159/000495422

Source DB:  PubMed          Journal:  Horm Res Paediatr        ISSN: 1663-2818            Impact factor:   2.852


  6 in total

1.  Factor Analysis of the Stigma Scale-Parent Version in Pediatric Disorders/Differences of Sex Development.

Authors:  Katherine A Traino; Marissa N Baudino; Jacob D Kraft; Nathan L Basile; Taylor M Dattilo; Morgan P Davis; Cindy Buchanan; Earl Y Cheng; Dix P Poppas; Amy B Wisniewski; Larry L Mullins
Journal:  Stigma Health       Date:  2021-11

2.  Post-operative complications following feminizing genitoplasty in moderate to severe genital atypia: Results from a multicenter, observational prospective cohort study.

Authors:  Avi Baskin; Amy B Wisniewski; Christopher E Aston; Paul Austin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson Fried; Thomas Kolon; Yegappan Lakshmanan; Pierre Williot; Sabrina Meyer; Theresa Meyer; Bradley Kropp; Natalie Nokoff; Blake Palmer; Alethea Paradis; Dix Poppas; Brian VanderBrink; Kristy J Scott Reyes; Amy Tishelman; Cortney Wolfe-Christensen; Elizabeth Yerkes; Larry L Mullins; Laurence Baskin
Journal:  J Pediatr Urol       Date:  2020-06-01       Impact factor: 1.921

3.  Prenatal detection and evaluation of differences of sex development: A qualitative interview study of parental perspectives and unmet needs.

Authors:  J Whitehead; Josephine Hirsch; Ilina Rosoklija; Allison Goetsch Weisman; Jeffrey Dungan; Courtney Finlayson; Diane Chen; Emilie K Johnson
Journal:  Prenat Diagn       Date:  2022-06-11       Impact factor: 3.242

4.  Post-operative complications following masculinizing genitoplasty in moderate to severe genital atypia: results from a multicenter, observational prospective cohort study.

Authors:  Christopher J Long; Jason Van Batavia; Amy B Wisniewski; Christopher E Aston; Laurence Baskin; Earl Y Cheng; Yegappan Lakshmanan; Theresa Meyer; Bradley Kropp; Blake Palmer; Natalie J Nokoff; Alethea Paradis; Brian VanderBrink; Kristy J Scott Reyes; Elizabeth Yerkes; Dix P Poppas; Larry L Mullins; Thomas F Kolon
Journal:  J Pediatr Urol       Date:  2021-02-19       Impact factor: 1.921

5.  Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.

Authors:  Caroline M Roberts; Christina M Sharkey; Dana M Bakula; Megan N Perez; Alexandria J Delozier; Paul F Austin; Laurence S Baskin; Yee-Ming Chan; Earl Y Cheng; David A Diamond; Allyson J Fried; Bradley Kropp; Yegappan Lakshmanan; Sabrina Z Meyer; Theresa Meyer; Natalie J Nokoff; Blake W Palmer; Alethea Paradis; Kristy J Scott Reyes; Amy Tishelman; Pierre Williot; Cortney Wolfe-Christensen; Elizabeth B Yerkes; Christopher Aston; Amy B Wisniewski; Larry L Mullins
Journal:  J Pediatr Psychol       Date:  2020-10-01

6.  Parent-reported outcomes in young children with disorders/differences of sex development.

Authors:  Salma R Ali; Zoe Macqueen; David E Sandberg; S Faisal Ahmed; Melissa Gardner; Yiqiao Xin; Andreas Kyriakou; Avril Mason; M Guftar Shaikh; Sze C Wong
Journal:  Int J Pediatr Endocrinol       Date:  2020-02-14
  6 in total

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