镰状细胞病急性疼痛危象中的寻求帮助：加拿大患者与照料者视角

数据集获取（Figshare）

• 源站标题：Getting Help During Active Pain Crises in Sickle Cell Disease: Patient and Caregiver Perspectives in Canada
• DOI：10.6084/m9.figshare.27152678.v1
• 发布日期：2024-10-02
• 文件数：4 个
• 文件总体积：112.67 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Getting_Help_During_Active_Pain_Crises_in_Sickle_Cell_Disease_Patient_and_Caregiver_Perspectives_in_Canada/27152678

命令行下载

curl -L -o "icmo_a_2393863_sm8331.m4a" "https://ndownloader.figshare.com/files/49563143"
curl -L -o "icmo_a_2393863_sm8330.m4a" "https://ndownloader.figshare.com/files/49563140"
curl -L -o "icmo_a_2393863_sm8329.m4a" "https://ndownloader.figshare.com/files/49563137"
curl -L -o "icmo_a_2393863_sm8328.m4a" "https://ndownloader.figshare.com/files/49563134"

文件清单

• icmo_a_2393863_sm8331.m4a（24.04 KB）
• icmo_a_2393863_sm8330.m4a（30.10 KB）
• icmo_a_2393863_sm8329.m4a（34.55 KB）
• icmo_a_2393863_sm8328.m4a（23.98 KB）

文件总体积 112.67 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

What is this summary about?
This is a plain language summary of an article originally published in Patient Preference and Adherence. This study aimed to identify the notable symptoms and impacts of sickle cell disease from the point of view of individuals living with sickle cell disease and their caregivers. The study also sought to understand the factors involved in individuals living with sickle cell disease’ and caregivers’ decisions and preferences if and when they seek care during a pain crisis. This summary describes: the symptoms experienced by adolescents and adults living with sickle cell disease and their severity; the treatments they and their caregivers prefer to use when they are experiencing a pain crisis; and the factors that go into deciding when and whether individuals living with sickle cell disease and their caregivers should seek outside help to go to a hospital, for example - during a pain crisis.
What were the results?
Individuals living with sickle cell disease undergoing an acute pain crisis and their caregivers consider many factors when deciding whether to seek care at a medical facility. These include:

The intensity of their symptoms
If the facility has a treatment plan for them already in place
If the facility has long wait times
If the facility has an understanding and compassionate staff
The individual’'s age and ability to manage their daily responsibilities

The intensity of their symptoms
If the facility has a treatment plan for them already in place
If the facility has long wait times
If the facility has an understanding and compassionate staff
The individual’‘s age and ability to manage their daily responsibilities
Racial bias, shown in the actions and lack of empathy of Emergency Department staff toward individuals living with sickle cell disease, frequently factored into the individuals’’ and caregivers’ decision-making and hinders their ability to get the treatment needed during a pain crisis.
What do the results mean?
There is a need for a unified care team at medical facilities that treats all individuals living with sickle cell disease with the same high level of empathy and treatment quality and for a strong

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.27152678.v1（source: https://tandf.figshare.com/articles/dataset/Getting_Help_During_Active_Pain_Crises_in_Sickle_Cell_Disease_Patient_and_Caregiver_Perspectives_in_Canada/27152678）。