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.
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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