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Real-time data monitoring for ulcerative colitis: patient perception and qualitative analysis
Intestinal Research ; : 365-374, 2019.
Article in English | WPRIM | ID: wpr-764154
ABSTRACT
BACKGROUND/

AIMS:

TrueColours ulcerative colitis (TCUC) is a comprehensive web-based program that functions through email, providing direct links to questionnaires. Several similar programs are available, however patient perspectives are unexplored.

METHODS:

A pilot study was conducted to determine feasibility, usability and patient perceptions of real-time data collection (daily symptoms, fortnightly quality of life, 3 monthly outcomes). TCUC was adapted from a web-based program for patients with relapsing-remitting bipolar disorder, using validated UC indices. A semi-structured interview was developed and audio-recorded face-to-face interviews were conducted after 6 months of interaction with TCUC. Transcripts were coded in NVivo11, a qualitative data analysis software package. An inductive approach and thematic analysis was conducted.

RESULTS:

TCUC was piloted in 66 patients for 6 months. Qualitative analysis currently defies statistical appraisal beyond “data saturation,” even if it has more influence on clinical practice than quantitative data. A total of 28 face-to-face interviews were conducted. Six core themes emerged awareness, control, decision-making, reassurance, communication and burden of treatment. There was a transcending overarching theme of patient empowerment, which cut across all aspects of the TCUC experience.

CONCLUSIONS:

Patient perception of the impact of real-time data collection was extremely positive. Patients felt empowered as a product of the self-monitoring format of TCUC, which may be a way of improving self-management of UC whilst also decreasing the burden on the individual and healthcare services.
Subject(s)

Full text: Available Index: WPRIM (Western Pacific) Main subject: Patient Participation / Quality of Life / Self Care / Ulcer / Bipolar Disorder / Electronic Data Processing / Colitis, Ulcerative / Pilot Projects / Data Collection / Statistics as Topic Type of study: Prognostic study / Qualitative research Limits: Humans Language: English Journal: Intestinal Research Year: 2019 Type: Article

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Full text: Available Index: WPRIM (Western Pacific) Main subject: Patient Participation / Quality of Life / Self Care / Ulcer / Bipolar Disorder / Electronic Data Processing / Colitis, Ulcerative / Pilot Projects / Data Collection / Statistics as Topic Type of study: Prognostic study / Qualitative research Limits: Humans Language: English Journal: Intestinal Research Year: 2019 Type: Article