Real-time data monitoring for ulcerative colitis: patient perception and qualitative analysis
- Author:
Alissa WALSH
1
;
Lawrence MATINI
;
Christopher HINDS
;
Vanashree SEXTON
;
Oliver BRAIN
;
Satish KESHAV
;
John GEDDES
;
Guy GOODWIN
;
Gary COLLINS
;
Simon TRAVIS
;
Michele PETERS
Author Information
- Publication Type:Original Article
- Keywords: Electronic data processing; Colitis, ulcerative; Perception
- MeSH: Automatic Data Processing; Bipolar Disorder; Colitis, Ulcerative; Data Collection; Delivery of Health Care; Electronic Mail; Humans; Patient Participation; Pilot Projects; Quality of Life; Self Care; Statistics as Topic; Ulcer
- From:Intestinal Research 2019;17(3):365-374
- CountryRepublic of Korea
- Language:English
- 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.
