Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.

ABSTRACT:

Introduction

Differences of sex development (DSD) encompass several rare diagnoses with medical and social implications. If a child is suspected of having DSD, timely and comprehensive information to the family is crucial for an undisturbed parent-child relationship and a good outcome. Providing information and competent care for a child with DSD is challenging for medical staff and parents, especially at the beginning of care, when many diagnostic results are still pending. The Empower-DSD information management program provides a structured multidisciplinary care and information exchange for children and their parents in the first 8-12 weeks after presenting to a specialized DSD center.

Methods

From June 2020 to August 2022, 51 families completed the structured care pathwa

SUBMITTER: Wechsung K 

PROVIDER: S-EPMC11973257 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature