Diagnosis of DSD in Children-Development of New Tools for a Structured Diagnostic and Information Management Program
Katja Wechsung1, Louise Marshall2, Martina Jürgensen2
1Department for Pediatric Endocrinology and Diabetology, Center for Chronic Sick Children, Charité-Universitätsmedizin Berlin, Augustenburger Platz 1, 13353 Berlin, Germany.
Insights
This study introduces a standardized information management program for children with differences of sex development (DSD). It provides tools for healthcare teams and families, improving care during the critical initial weeks after diagnosis.
Area of Science:
- Pediatric Endocrinology
- Genetics
- Medical Ethics
Background:
- Current care for children with genital variations and suspected differences of sex development (DSD) lacks standardization.
- Recommendations emphasize structured diagnosis, clear information, and psychosocial support from specialized teams.
- Shared decision-making involving the child and parents is crucial for individualized care plans.
Purpose of the Study:
- To develop and standardize a diagnostic and information management program for DSD care.
- To create tools supporting patients and healthcare professionals in the initial phase after a suspected DSD diagnosis.
Main Methods:
- Development of a new program within the Empower-DSD study.
- Collaboration between professionals and patient advocacy groups.
- Creation of tools based on current recommendations and existing patient information.
Main Results:
- A new information management program standardizes care elements for the initial weeks post-suspected DSD diagnosis.
- Three tools were developed: a guideline for multiprofessional teams, a personal health record/kit for families, and a booklet for non-specialized medical staff.
Conclusions:
- The developed information management provides guidance for patients and professionals during the early stages of suspected DSD.
- Evaluation of the tools will offer insights into the diagnostic process, information sharing, and stakeholder needs.
Background:
Current recommendations define a structured diagnostic process, transparent information, and psychosocial support by a specialized, multi-professional team as central in the care for children and adolescents with genital variations and a suspected difference of sex development (DSD). The active involvement of the child and their parents in shared decision-making should result in an individualized care plan. So far, this process has not been standardized.
Methods:
Within the Empower-DSD study, a team of professionals and representatives of patient advocacy groups developed a new diagnostic and information management program based on current recommendations and existing patient information.
Results:
The information management defines and standardizes generic care elements for the first weeks after a suspected DSD diagnosis. Three different tools were developed: a guideline for the specialized multiprofessional team, a personal health record and information kit for the child with DSD and their family, and a booklet for medical staff not specialized in DSD.
Conclusions:
The new information management offers guidance for patients and professionals during the first weeks after a DSD diagnosis is suspected. The developed tools' evaluation will provide further insight into the diagnostic and information-sharing process as well as into all of the involved stakeholders' needs.
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