儿童DSD诊断后的结构化护理：Empower-DSD项目混合方法评估数据表2

数据集获取（Figshare）

• 源站标题：Data Sheet 2_Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.docx
• DOI：10.3389/fped.2025.1488411.s002
• 发布日期：2025-03-24
• 文件数：1 个
• 文件总体积：18.94 KB
• 源站页面：https://frontiersin.figshare.com/articles/dataset/Data_Sheet_2_Structured_care_after_a_DSD_diagnosis_in_childhood_a_mixed_methods_evaluation_of_the_Empower-DSD_program_docx/28648004

命令行下载

curl -L -o "Data Sheet 2_Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.docx" "https://ndownloader.figshare.com/files/53173250"

文件清单

• Data Sheet 2_Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.docx（18.94 KB）

文件总体积 18.94 KB（源站 API 实测）。

数据加载示例（图像类）

from PIL import Image
import glob, os

files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)

# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path)  # 要求 子目录=类别

目录组织与标注格式以源站说明和下载后实际文件为准。

数据说明

IntroductionDifferences 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.
MethodsFrom June 2020 to August 2022, 51 families completed the structured care pathway in 4 DSD centers in Germany as part of the government-funded Empower-DSD study. The program was evaluated with a quantitative and a qualitative approach. Diagnosis, age of child, total duration, number of appointments, and completed elements of care were documented. Semi-structured guided interviews with parents, peers and professionals were used to explore expectations and the experience of the involved stakeholders.
ResultsCare elements were documented in 11 children with congenital adrenal hyperplasia (CAH) and 28 children with other DSD-diagnoses (chromosomal DSD; 46, XY-DSD; 46, XX-DSD) with a mean age of 1.8 years (0–18 years). In total 45 people were interviewed. The information management program alleviated stress and uncertainties for parents and encouraged a trusting relationship with the DSD team. Professionals rated the developed materials as a valuable tool to provide consistent and thorough care. Parents underlined the importance of the early access to specialized DSD teams, a clear and open communication and the reassuring attitude of professionals in DSD care. Parents and professionals stated that the program required time and resources and would prefer an individualized approach instead of a predefined duration.
ConclusionThe structured, multidisciplinary support within the first weeks after a DSD diagnosis was perceived to be of high quality by all stakeholders involved. Inf

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fped.2025.1488411.s002（source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_2_Structured_care_after_a_DSD_diagnosis_in_childhood_a_mixed_methods_evaluation_of_the_Empower-DSD_program_docx/28648004）。