Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study
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...
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-07-01
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| Series: | Journal of Clinical Medicine |
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| Online Access: | https://www.mdpi.com/2077-0383/11/13/3859 |
| _version_ | 1797408755962347520 |
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| author | Katja Wechsung Louise Marshall Martina Jürgensen Uta Neumann on behalf of the Empower-DSD Study Group |
| author_facet | Katja Wechsung Louise Marshall Martina Jürgensen Uta Neumann on behalf of the Empower-DSD Study Group |
| author_sort | Katja Wechsung |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-09T04:04:12Z |
| format | Article |
| id | doaj.art-08b67a97a0f7459f8a9ab80993eb83a5 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-09T04:04:12Z |
| publishDate | 2022-07-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-08b67a97a0f7459f8a9ab80993eb83a52023-12-03T14:08:59ZengMDPI AGJournal of Clinical Medicine2077-03832022-07-011113385910.3390/jcm11133859Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD StudyKatja Wechsung0Louise Marshall1Martina Jürgensen2Uta Neumann3on behalf of the Empower-DSD Study GroupDepartment for Pediatric Endocrinology and Diabetology, Center for Chronic Sick Children, Charité-Universitätsmedizin Berlin, Augustenburger Platz 1, 13353 Berlin, GermanyDivision of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, University of Lübeck, Ratzeburger Allee 160, 23538 Luebeck, GermanyDivision of Pediatric Endocrinology and Diabetes, Department of Pediatrics and Adolescent Medicine, University of Lübeck, Ratzeburger Allee 160, 23538 Luebeck, GermanyDepartment for Pediatric Endocrinology and Diabetology, Center for Chronic Sick Children, Charité-Universitätsmedizin Berlin, Augustenburger Platz 1, 13353 Berlin, GermanyBackground: 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.https://www.mdpi.com/2077-0383/11/13/3859DSDinformation managementshared decision-makinggenital variationgender assignmentdiagnostics |
| spellingShingle | Katja Wechsung Louise Marshall Martina Jürgensen Uta Neumann on behalf of the Empower-DSD Study Group Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study Journal of Clinical Medicine DSD information management shared decision-making genital variation gender assignment diagnostics |
| title | Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study |
| title_full | Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study |
| title_fullStr | Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study |
| title_full_unstemmed | Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study |
| title_short | Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study |
| title_sort | diagnosis of dsd in children development of new tools for a structured diagnostic and information management program within the empower dsd study |
| topic | DSD information management shared decision-making genital variation gender assignment diagnostics |
| url | https://www.mdpi.com/2077-0383/11/13/3859 |
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