帕金森病预先护理计划患者访谈数据集

数据集获取（Figshare）

• 源站标题：Data_Sheet_1_Advanced Care Planning in Parkinson’'s Disease: In-depth Interviews With Patients on Experiences and Needs.pdf
• DOI：10.3389/fneur.2021.683094.s001
• 发布日期：2021-07-28
• 文件数：1 个
• 文件总体积：121.83 KB
• 源站页面：https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_Advanced_Care_Planning_in_Parkinson_s_Disease_In-depth_Interviews_With_Patients_on_Experiences_and_Needs_pdf/15065445

命令行下载

curl -L -o "Data_Sheet_1_Advanced Care Planning in Parkinson''s Disease: In-depth Interviews With Patients on Experiences and Needs.pdf" "https://ndownloader.figshare.com/files/28968984"

文件清单

• Data_Sheet_1_Advanced Care Planning in Parkinson''s Disease: In-depth Interviews With Patients on Experiences and Needs.pdf（121.83 KB）

文件总体积 121.83 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

Introduction: Advance care planning (ACP) is an iterative process of discussing the needs, wishes, and preferences of patients regarding disease-specific and end-of-life issues. There is ample evidence that ACP improves the quality of life and promotes the autonomy of patients with cancer and motor neuron disease who have a high disease burden and shortened life expectancy. In Parkinson’'s disease (PD) though, knowledge about the experiences and preferences of patients regarding ACP is scarce, despite the major disease burden associated with PD.
Aim: This study aims to explore the experiences, needs, and preferences of PD patients regarding the content and timing of ACP.
Methods: In-depth interviews were conducted with a purposively selected sample of patients diagnosed with PD. Using a semi-structured topic list, the participants were asked about their prospects for a future living with PD and with whom they wanted to discuss this. Qualitative analysis was performed in parallel with data collection using a data-driven constant comparative approach. The transcribed interviews were coded and analyzed by two researchers using MAXQDA software.
Results: Of all 20 patients (13 males; age 47–82; disease duration 1–27 years), most expressed a wish to talk about ACP with a healthcare provider, enabling them to anticipate the uncertain future. The majority of patients preferred their healthcare provider to initiate the discussion on ACP, preferably at an early stage of the disease. Nearly all patients expressed the wish to receive more information regarding the long-term impact of PD, although, the preferred timing varied between patients. They also perceived that their neurologist was primarily focused on medication and had little time to address their need for a more holistic approach toward living with PD.
Conclusion: Our results suggest that PD patients are in need of discussing ACP with their healthcare provider (HCP), even in the early stages of the disease. In addition, PD patients perceive a lack of information on their disease course and miss guidance on available supportive care. We recommend HCPs to inquire the information requirements and preferences of patien

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fneur.2021.683094.s001（source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_1_Advanced_Care_Planning_in_Parkinson_s_Disease_In-depth_Interviews_With_Patients_on_Experiences_and_Needs_pdf/15065445）。