严重联合免疫缺陷：医疗提供者的知识与信息需求数据表

数据集获取（Figshare）

• 源站标题：Data_Sheet_1_Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.docx
• DOI：10.3389/fped.2022.804709.s001
• 发布日期：2022-02-21
• 文件数：1 个
• 文件总体积：33.54 KB
• 源站页面：https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_Severe_Combined_Immunodeficiency_Knowledge_and_Information_Needs_Among_Healthcare_Providers_docx/19206150

命令行下载

curl -L -o "Data_Sheet_1_Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.docx" "https://ndownloader.figshare.com/files/34119102"

文件清单

• Data_Sheet_1_Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.docx（33.54 KB）

文件总体积 33.54 KB（源站 API 实测）。

数据说明

BackgroundSevere combined immunodeficiency (SCID) is a group of life-threatening genetic disorders responsible for severe dysfunctions of the immune system. Despite the expansion of newborn screening in the U.S., there are gaps in healthcare providers’’ knowledge of SCID.
MethodsWe recruited 277 U.S. healthcare providers for an online survey. The survey assessed providers’’ experience with SCID patients, knowledge about SCID, and needs and preferred formats for SCID-related informational resources. We examined differences between providers who have seen 2 or more patients with SCID (SCID provider group) and those who have seen 0–1 SCID patients (non-SCID provider group).
ResultsOverall, 210 (75.8%) providers were included in the non-SCID provider group, and 121 (57.6%) of these providers were pediatricians. Compared to the SCID provider group, non-SCID provider group reported lower mean rating of SCID knowledge (x̄ = 4.8 vs. x̄ = 8.6, p Based on their experience with treating SCID patients, providers have varying levels of SCID knowledge and different informational needs. For providers who have encountered few SCID patients, informational needs start early, usually immediately after receiving a positive newborn screening result. These findings provide useful direction for the development and preferred outlets for receiving SCID-related information, with some variations between different types of providers. Results from this study will serve as a guide for creating relevant and accessible SCID resources for providers who can utilize them to improve care for SCID patients.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fped.2022.804709.s001（source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_Severe_Combined_Immunodeficiency_Knowledge_and_Information_Needs_Among_Healthcare_Providers_docx/19206150）。