Utilization of a shared decision-making tool in a female infant with congenital adrenal hyperplasia and genital ambiguity
-
Reeti Chawla
,
Erica M. Weidler
Abstract
Background
Shared decision-making (SDM) is the process by which patients/families and providers make healthcare decisions together. Our team of multidisciplinary disorders of sex development (DSD) has developed an SDM tool for parents and female patients with congenital adrenal hyperplasia (CAH) and associated genital atypia.
What is new
Elective genital surgery is considered controversial. SDM in a patient with genital atypia will allow patient/family to make an informed decision regarding surgical intervention.
Case presentation
Our patient is a 2.5-year-old female with CAH and genital atypia. Initially, her parents had intended to proceed with surgery; however, after utilizing the SDM checklist, they made an informed decision to defer urogenital sinus surgery for their daughter.
Conclusions
We successfully utilized an SDM tool with parents of a female infant with CAH and genital atypia, which allowed them to make an informed decision regarding surgery for their daughter. Future directions include a prospective enrolling study to determine the generalizability and applicability of SDM with families of children diagnosed with CAH.
Acknowledgments
None declared.
Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.
Research funding: None declared.
Employment or leadership: None declared.
Honorarium: None declared.
Competing interests: The funding organization played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.
References
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Supplementary Material
The online version of this article offers supplementary material (https://doi.org/10.1515/jpem-2018-0567).
©2019 Walter de Gruyter GmbH, Berlin/Boston
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Artikel in diesem Heft
- Frontmatter
- Review
- PCOS diagnosis in adolescents: the timeline of a controversy in a systematic review
- Original Articles
- Association between mild hyperthyrotropinemia and hypercholesterolemia in children with severe obesity
- Self-rated Tanner stage and subjective measures of puberty are associated with longitudinal gonadal hormone changes
- Early puberty in end stage renal failure and renal transplant recipients
- Present status of prophylactic thyroidectomy in pediatric multiple endocrine neoplasia 2: a nationwide survey in Japan 1997–2017
- Evolution of circulating thyroid hormone levels in preterm infants during the first week of life: perinatal influences and impact on neurodevelopment
- Wolcott-Rallison syndrome in Iran: a common cause of neonatal diabetes
- Etiology of primary adrenal insufficiency in children: a 29-year single-center experience
- The European Phenylketonuria Guidelines and the challenges on management practices in Portugal
- Case Reports
- Transient neonatal hypothyroidism following a short course of maternal amiodarone therapy
- A series of three case reports in patients with phenylketonuria performing regular exercise: first steps in dietary adjustment
- Utilization of a shared decision-making tool in a female infant with congenital adrenal hyperplasia and genital ambiguity
- Experience of intravenous calcium treatment and long-term responses to treatment in a patient with hereditary vitamin D-resistant rickets resulting from a novel mutation
