患者对外围的观点,经验和担忧:在线针对性疾病论坛的见解
Carine Khalil1, Welmoed K van Deen1,2, Taylor Dupuy1
1Division of Health Services Research, Cedars-Sinai Medical Center, Center for Outcomes Research and Education (CS-CORE), Los Angeles, CA, USA.
Crohn's & colitis 360
|December 4, 2023
概括
社交媒体分析显示,患有克罗恩氏病和周囊的患者经历了重大负担和治疗挑战. 患者积极在网上搜索和分享信息,突出了管理这种疾病的未满足需求.
科学领域:
- 胃肠病学 胃肠病学
- 数字健康数字健康
- 患者体验研究 研究研究
背景情况:
- 周围囊显著影响克罗恩病患者的身体,情感和社会福祉.
- 在克罗恩氏病中管理周围囊会带来相当大的临床挑战.
- 社交媒体提供了一个独特的平台,以了解超出临床环境的患者体验.
研究的目的:
- 分析社交媒体讨论,以深入了解患者在克罗恩病中患有围囊的经验.
- 通过使用社交媒体数据,评估围囊对患者日常生活,行为和整体幸福感的影响.
- 确定患者对周管及其管理所表达的关键主题和关切.
主要方法:
- 采用了一种混合方法方法,将定性主题分析和定量主题建模结合起来.
- 分析了来自10个美国克罗恩病论坛 (2010-2020) 的119,986个公开可用的帖子.
- 随机选择700个帖子进行定性诱导主题分析;潜伏的迪里克莱特分配进行无监督的主题探索.
主要成果:
- 定性分析确定了5个主要主题:的负担,治疗挑战,信息搜索/共享,治疗经验和对治疗的担忧.
- 定量分析显示,与治疗挑战 (29%) 和在线信息搜索/共享 (66%) 相关的主题是突出的.
- 患者经常表达对当前治疗的不满,以及难以导航管理选项的困难.
结论:
- 社交媒体分析提供了宝贵的见解,了解克罗恩氏病患者的多方面的经验.
- 患者面临着相当大的生物心理社会负担,并且经常表达对可用的治疗策略的不满.
- 显然需要改善克罗恩病中围囊管的管理选择和患者支持.
相关概念视频
01:25Assessment of the Rectum and Anus
232
Evaluating the rectum and anus plays a crucial role in conducting a thorough physical examination of the gastrointestinal system. Although it may be uncomfortable and often embarrassing for the patient, it holds immense diagnostic value, particularly in detecting gastrointestinal diseases and abnormalities. This guide will explain how to perform this assessment using inspection and palpation methods.
Rectal Inspection
Begin by inspecting the perianal and anal areas for color, texture, rashes,...
Rectal Inspection
Begin by inspecting the perianal and anal areas for color, texture, rashes,...
232
01:21Inflammatory Bowel Disease V: Surgical Management
148
Surgical interventions for inflammatory bowel disease (IBD), which includes ulcerative colitis and Crohn's disease, are essential in managing symptoms and addressing complications. The selection of surgical procedures is contingent upon the specific conditions and complications that stem from these illnesses.
Here are some common surgical interventions for IBD:
Here are some common surgical interventions for IBD:
148
01:17Assessment of the Gastrointestinal System I: Subjective Data
200
Assessing the gastrointestinal (GI) system is a complex process that begins with collecting subjective data. This data, collected through patient interviews, provides crucial insights into the patient's health history, perception patterns, and lifestyle habits, all contributing significantly to GI health.
Health History
The initial step in assessing the GI system is obtaining a comprehensive health history. This includes inquiring about the patient's history or presence of problems...
Health History
The initial step in assessing the GI system is obtaining a comprehensive health history. This includes inquiring about the patient's history or presence of problems...
200
01:30Inflammatory Bowel Disease III: Diagnostic Studies and Management I-Nutritional Therapy
335
Various diagnostic tests are employed in the diagnostic process for Inflammatory Bowel Disease (IBD), particularly to differentiate between Crohn's disease and ulcerative colitis.
Diagnostic studies
A colonoscopy is the definitive screening test, distinguishing ulcerative colitis from other colon diseases with similar symptoms. During a colonoscopy test, inflamed mucosa with exudate ulcerations can be observed, and biopsies are taken to determine the histologic characteristics of the...
Diagnostic studies
A colonoscopy is the definitive screening test, distinguishing ulcerative colitis from other colon diseases with similar symptoms. During a colonoscopy test, inflamed mucosa with exudate ulcerations can be observed, and biopsies are taken to determine the histologic characteristics of the...
335
01:29Assessment of the Gastrointestinal System II: Health Perception Pattern
121
Assessing the gastrointestinal (GI) system is a complex process that begins with collecting subjective data. This data, collected through patient interviews, provides crucial insights into the patient's health history, perception patterns, and lifestyle habits, all contributing significantly to GI health.
Health Perception Patterns
Health perception patterns offer valuable insights into a patient's lifestyle habits and how they may impact their GI health. These patterns include:
Health Perception Patterns
Health perception patterns offer valuable insights into a patient's lifestyle habits and how they may impact their GI health. These patterns include:
121
01:30Inflammatory Bowel Disease II: Crohn's Disease
255
Introduction
Inflammatory bowel disease, commonly known as IBD, refers to a collection of disorders that lead to persistent inflammation of the gastrointestinal tract. The two types of IBD are ulcerative colitis, which impacts the colon, and Crohn's disease, which can involve any part of the gastrointestinal segment.
Crohn's disease
Crohn's disease is a chronic, systemic inflammatory bowel disease (IBD) that predominantly affects the gastrointestinal tract. It is marked by...
Inflammatory bowel disease, commonly known as IBD, refers to a collection of disorders that lead to persistent inflammation of the gastrointestinal tract. The two types of IBD are ulcerative colitis, which impacts the colon, and Crohn's disease, which can involve any part of the gastrointestinal segment.
Crohn's disease
Crohn's disease is a chronic, systemic inflammatory bowel disease (IBD) that predominantly affects the gastrointestinal tract. It is marked by...
255