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Pilot evaluation of web enabled symptom monitoring in cystic fibrosis


Roehrer, E and Cummings, E and Beggs, S and Turner, P and Hauser, J and Micallef, N and Ellis, L and Reid, D, Pilot evaluation of web enabled symptom monitoring in cystic fibrosis, Informatics for Health and Social Care, 38, (4) pp. 354-365. ISSN 1753-8157 (2013) [Refereed Article]

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Copyright Statement

Copyright 2013 Inform UK Ltd

DOI: doi:10.3109/17538157.2013.812646


Background: 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 userís 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.

Item Details

Item Type:Refereed Article
Keywords:Consumer health information systems, cystic fibrosis self monitoring, patient-centred systems, self-management tools
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Health informatics and information systems
Objective Division:Health
Objective Group:Clinical health
Objective Field:Clinical health not elsewhere classified
UTAS Author:Roehrer, E (Dr Erin Roehrer)
UTAS Author:Cummings, E (Associate Professor Liz Cummings)
UTAS Author:Turner, P (Associate Professor Paul Turner)
UTAS Author:Ellis, L (Associate Professor Leonie Ellis)
ID Code:86636
Year Published:2013
Web of Science® Times Cited:14
Deposited By:Health Sciences B
Deposited On:2013-10-04
Last Modified:2018-03-20
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