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“我的溃疡性结肠炎故事”:一项描述溃疡性结肠炎患者就医历程的质性描述性研究

"My UC Story": A Qualitative Descriptive Study Describing the Patient Journey for Ulcerative Colitis.

作者信息

Jradi Amy K, Xia Jane, Seet Tony, Albon Simon

机构信息

Vancouver Coastal Health.

University of British Columbia, Faculty of Pharmaceutical Sciences.

出版信息

Innov Pharm. 2023 Nov 20;14(4). doi: 10.24926/iip.v14i4.5697. eCollection 2023.

Abstract

: Personal perspectives of patients are seldomly reported in the literature, most notably their journey to diagnosis. Literature is heavily focused on the patient journey from a healthcare professional's point of view during the treatment process. The objective of this study is to conduct a qualitative study on a video-sharing site, YouTube, to determine if the patient journey from a subjective perspective is truly linear for those who suffer from ulcerative colitis. : Phrases searched on YouTube included "ulcerative colitis story" and "ulcerative colitis diagnosis story". Video monologues chronicling the patient journey before diagnoses were transcribed using the YouTube transcription function to identify patterns amongst users' experiences. Thematic analysis was used to identify whether certain themes were present in the monologues. Analysis was performed using NVivo 12 QRS International and used line-by-line coding to create an initial codebook that represented the concepts covered in the monologues. : We viewed a total of 48 videos and included 29 videos from 2010 to 2020 for qualitative analysis. Overall, three major themes were identified in the patient journey prior to ulcerative colitis diagnosis:1) initial symptoms, 2) initial encounter with the healthcare system, and 3) gastroenterologist referral. : The literature depicts the patient journey as a linear path. This qualitative study discovers that the reality of the patient journey is, in fact, non-linear. Many creators did not identify pharmacists in their patient journey; however, we know from the literature that pharmacists are the most accessible healthcare professional. With the appropriate tools, pharmacists can help guide patients in prioritizing signs and symptoms to streamline the non-linear path that patients experience.

摘要

患者的个人观点在文献中很少被报道,尤其是他们的诊断历程。文献在很大程度上是从医疗保健专业人员的角度关注治疗过程中的患者历程。本研究的目的是在视频分享网站YouTube上进行一项定性研究,以确定从主观角度来看,溃疡性结肠炎患者的历程是否真的是线性的。:在YouTube上搜索的短语包括“溃疡性结肠炎故事”和“溃疡性结肠炎诊断故事”。使用YouTube转录功能转录记录诊断前患者历程的视频独白,以识别用户经历中的模式。主题分析用于确定独白中是否存在某些主题。使用NVivo 12 QRS International进行分析,并使用逐行编码创建一个初始编码手册,该手册代表独白中涵盖的概念。:我们总共查看了48个视频,并纳入了2010年至2020年的29个视频进行定性分析。总体而言,在溃疡性结肠炎诊断之前的患者历程中确定了三个主要主题:1)初始症状,2)首次接触医疗保健系统,3)胃肠病学家转诊。:文献将患者历程描述为一条线性路径。这项定性研究发现,患者历程的实际情况实际上是非线性的。许多创作者在他们的患者历程中没有提到药剂师;然而,我们从文献中知道药剂师是最容易接触到的医疗保健专业人员。有了适当的工具,药剂师可以帮助指导患者对症状进行优先级排序,以简化患者所经历的非线性路径。

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