眼球震颤患者信息与支持影响评估问卷数据集

数据集获取（Figshare）

• 源站标题：Evaluating the impact of information and support for people with nystagmus in the digital age: A patient and carer questionnaire study
• DOI：10.6084/m9.figshare.11461407.v1
• 发布日期：2019-12-26
• 文件数：5 个
• 文件总体积：318.39 KB
• 源站页面：https://tandf.figshare.com/articles/dataset/Evaluating_the_impact_of_information_and_support_for_people_with_nystagmus_in_the_digital_age_A_patient_and_carer_questionnaire_study/11461407

命令行下载

curl -L -o "ncer-2019-sc-0620-File007.pdf" "https://ndownloader.figshare.com/files/20450406"
curl -L -o "ncer-2019-sc-0620-File008.pdf" "https://ndownloader.figshare.com/files/20450409"
curl -L -o "ncer-2019-sc-0620-File009.pdf" "https://ndownloader.figshare.com/files/20450412"
curl -L -o "ncer-2019-sc-0620-File010.pdf" "https://ndownloader.figshare.com/files/20450415"
curl -L -o "ncer-2019-sc-0620-File011.pdf" "https://ndownloader.figshare.com/files/20450418"

文件清单

• ncer-2019-sc-0620-File007.pdf（23.83 KB）
• ncer-2019-sc-0620-File008.pdf（226.52 KB）
• ncer-2019-sc-0620-File009.pdf（21.83 KB）
• ncer-2019-sc-0620-File010.pdf（23.81 KB）
• ncer-2019-sc-0620-File011.pdf（22.39 KB）

文件总体积 318.39 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

Background: Nystagmus is a disorder of rhythmic, involuntary oscillations of the eyes and can be classified as either infantile or acquired. Whether it occurs in isolation or as a part of other visual or neurological disorders, it causes significant visual dysfunction and problems with social functioning. In this study, we seek to understand ways in which people with nystagmus are currently supported across the UK and identify any geographical variations or disconnects between current practice and best practice, as judged by patients and their carers.
Methods: A nationwide, qualitative, cross-sectional, questionnaire study of people with nystagmus and their carers. Recruitment was achieved through specialist clinics, charity events, online advertisements and social media calls. Data was gathered using five, age-appropriate questionnaires which were completed and returned to the research team between November 2016 and August 2018.
Results: 184 respondents were included (89 carers, 47 patients aged 4–10 years, 5 aged 11–14 years, 4 aged 15–17 years and 39 > 18 years). Notably, respondents rated social media as the best source of information they have received, even compared with face-to-face consultation with medical professionals. Additionally, only 33% of the respondents had been offered visual impairment support. Notably, patterns of clinical practice and patient experience emerged according to geographical location, particularly provision of initial information and ongoing VI support.
Conclusions: This study highlights a significant variation in the support and information received by people in the UK with nystagmus. It also supports the role of charities and increasingly, social media in the provision of patient information. The study also highlights the need for standardized guidelines for the management of patients with nystagmus, particularly with regard to support and information.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.6084/m9.figshare.11461407.v1（source: https://tandf.figshare.com/articles/dataset/Evaluating_the_impact_of_information_and_support_for_people_with_nystagmus_in_the_digital_age_A_patient_and_carer_questionnaire_study/11461407）。