“My UC Story”: A Qualitative Descriptive Study Describing the Patient Journey for Ulcerative Colitis

Abstract

Background: 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. Methods: 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. Results: 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 3) gastroenterologist referral. Conclusions: 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. Pharmacists are the most accessible health care professionals and can help guide patients in prioritizing signs and symptoms to streamline the non-linear path that patients experience.

Keywords

• patient journey
• ulcerative colitis
• subjective experiences