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Pilot evaluation of web enabled symptom monitoring in cystic fibrosis
journal contribution
posted on 2023-05-17, 19:44 authored by Erin RoehrerErin Roehrer, Elizabeth CummingsElizabeth Cummings, Beggs, S, Paul TurnerPaul Turner, Hauser, J, Micallef, N, Leonie Ellis, Reid, DBackground: People with cystic fibrosis (CF) frequently experience isolation and are subjected to extensive complex treatment regimens which could be complemented by remote support. In the current research this is particularly relevant as the location, Tasmania, has the second highest incidence of CF in the world. This paper provides an overview of the evaluation of a pilot trial of an information system conceptualised and developed to assist people with CF, and their families, to enhance their skills and communication in relation to self-management for their condition. Methods: The pilot involved people with CF ranging in age from 19 months to 52 years and their families. The primary outcome was the perceived usability of the onlinesymptom diary from the user’s perspective. To assess perceived usability qualitative semi-structured interviews were conducted pre- and post-pilot and analysed using thematic coding. Results: Participants initially and primarily perceived myCF as a system that would help others and enable peer support. Connectivity and involvement were highlighted as complex issues that needed consideration. Conclusion: There was an overall encouraging response to the pilot and indications that the use of information communication technology to complement health care delivery and facilitate self-care skills may be particularly suited to the Australian context where geographical distances and isolation provide a relative barrier to specialist care for chronic complex conditions.
Funding
Tasmanian Community Fund
History
Publication title
Informatics for Health and Social CareVolume
38Issue
4Pagination
354-365ISSN
1753-8157Department/School
School of Information and Communication TechnologyPublisher
Informa HealthcarePlace of publication
United KingdomRights statement
Copyright 2013 Inform UK LtdRepository Status
- Restricted