ArticleHormone research in paediatrics2018
Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia.
Article in Hormone research in paediatrics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed.
- Validation of a parent-reported outcome measure for young boys with a condition affecting sex development (PRO-CSD).Archives of disease in childhood · 2025Article
- Development and validation of a short version of the quality of life-DSD questionnaire for parents of young children with conditions affecting sex development.Endocrine connections · 2024Article
- Exploratory factor analysis of the Illness Intrusiveness Rating Scale for parents of children with atypical genital appearance due to differences of sex development (DSD).Journal of pediatric psychology · 2024Article
- Adverse Birth Experiences and Parent Adjustment Associated With Atypical Genital Appearance Due to Differences of Sex Development.Journal of pediatric psychology · 2023Article
- Prenatal detection and evaluation of differences of sex development: A qualitative interview study of parental perspectives and unmet needs.Prenatal diagnosis · 2022Article
- Factor Analysis of the Stigma Scale-Parent Version in Pediatric Disorders/Differences of Sex Development.Stigma and health · 2021Article
- Post-operative complications following masculinizing genitoplasty in moderate to severe genital atypia: results from a multicenter, observational prospective cohort study.Journal of pediatric urology · 2021Observational
- Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.Journal of pediatric psychology · 2020Article
- Post-operative complications following feminizing genitoplasty in moderate to severe genital atypia: Results from a multicenter, observational prospective cohort study.Journal of pediatric urology · 2020Observational
- Parent-reported outcomes in young children with disorders/differences of sex development.International journal of pediatric endocrinology · 2020Article
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29 authors.
Funding
Abstract
BACKGROUND/
aimsParents 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).
methodsEighty-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.
resultsParental 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.
conclusionParental 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.
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