Intestinal Research

Guy Goodwin

1 Article

Inflammatory bowel diseases

Real-time data monitoring for ulcerative colitis: patient perception and qualitative analysis: Alissa Walsh, Lawrence Matini, Christopher Hinds, Vanashree Sexton, Oliver Brain, Satish Keshav, John Geddes, Guy Goodwin, Gary Collins, Simon Travis, Michele Peters; Intest Res 2019;17(3):365-374. Published online May 31, 2019; DOI: https://doi.org/10.5217/ir.2018.00173

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.

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