@Article{作者信息:doi / 10.2196/37518 = "·雷纳,西蒙和Loussikian,保罗和Foulqui {\ ' e},皮埃尔和阿诺德),Benoit Marrel,失读症和巴比尔,瓦伦汀Mebarki,阿德尔和原理图{\ " u} ck,圣{\ ' e} phane Bharmal, Murtuza”,标题= "感知未满足的需要与先进的膀胱癌患者和他们的照顾者:Infodemiology研究利用社交媒体数据在美国”,杂志= " JMIR癌症”,年= " 2022 ",月= " 9月”,天=“20”,体积=“8”,数量= " 3”,页面= " e37518”,关键词= "真实的证据;未满足的需求;生活质量;社交媒体;膀胱癌;照顾者”,抽象= "背景:局部晚期或转移性膀胱癌(BC),通常称为先进BC (aBC),预后很差,除了身体上的症状,它与情感和社会挑战。然而,很少有研究评估了aBC的未满足的需要和负担从病人和照顾者的角度。Infodemiology,流行病学基于互联网健康相关内容,可以帮助获得更多的见解与aBC病人和照顾者的经历。目的:研究旨在确认主要讨论主题和aBC患者未满足的需求和他们的照顾者通过混合方法分析社会媒体文章。方法:社交媒体文章收集2015年1月至2021年4月从我们geolocalized网站为美国广播公司使用特定的关键词。 Automatic natural language processing (regular expressions and machine learning) methods were used to filter out irrelevant content and identify verbatim posts from patients and caregivers. The verbatim posts were analyzed to identify main discussion themes using biterm topic modeling. Difficulties or unmet needs were further explored using qualitative research methods by 2 independent annotators until saturation of concepts. Results: A total of 688 posts from 262 patients and 1214 posts from 679 caregivers discussing aBC were identified. Analysis of 340 randomly selected patient posts and 423 randomly selected caregiver posts uncovered 33 unique unmet need categories among patients and 36 among caregivers. The main unmet patient needs were related to challenges regarding adverse events (AEs; 28/95, 29{\%}) and the psychological impact of aBC (20/95, 21{\%}). Other patient unmet needs identified were prognosis or diagnosis errors (9/95, 9{\%}) and the need for better management of aBC symptoms (9/95, 9{\%}). The main unmet caregiver needs were related to the psychological impacts of aBC (46/177, 26.0{\%}), the need for support groups and to share experiences between peers (28/177, 15.8{\%}), and the fear and management of patient AEs (22/177, 12.4{\%}). Conclusions: The combination of manual and automatic methods allowed the extraction and analysis of several hundreds of social media posts from patients with aBC and their caregivers. The results highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of this disease on quality of life. ", issn="2369-1999", doi="10.2196/37518", url="https://cancer.www.mybigtv.com/2022/3/e37518", url="https://doi.org/10.2196/37518", url="http://www.ncbi.nlm.nih.gov/pubmed/36125861" }