Pilot evaluation of web enabled symptom monitoring in cystic fibrosis
Open accessAbstract
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 online-symptom 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.
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The myCF pilot found that while it could help with peer support, the idea of virtual human connection required further review.
“and while it could help with peer support the idea of virtual human connection required further review (14).”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [14]
The myCF web-based symptom monitoring diary allowed symptom data to be collected and shared with health professionals and health mentors.
“This allowed symptom data to be collected and shared with health professionals and health mentors.”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [14]
Unlike other symptom monitoring approaches to date, myCF incorporated educational materials, was linked to a patient forum, and targeted both paediatric and adult patients, along with their families.
“Unlike other symptom monitoring approaches to date, myCF also incorporated educational materials, was linked to a patient forum, and targeted both paediatric and adult patients, along with their families.”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [14]
An initial pilot of myCF found that it showed promise in complementing standard care by facilitating development of self-care skills for patients and families with geographical restrictions to care.
“An initial pilot study of the system found that myCF showed promise in complimenting standard care by facilitating the development of self-care skills for patients and families with geographical restrictions to care”
From Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition (2023) · cites this paper as [14]
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“showed promise in complimenting standard care by facilitating the development of self-care skills for patients and families with geographical restrictions to care, and while it could help with peer support the idea of virtual human connection required further review (14).”
BackgroundNasr, S. Z., & Lechtzin, N. (2020) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2020.02.005
- Authors
- Roehrer, E., Cummings, E., Beggs, S., Turner, P., Hauser, J., Micallef, N., Ellis, L., & Reid, D.
- Affiliations
- University of Tasmania (AU)
- Royal Hobart Hospital (AU)
- QIMR Berghofer Medical Research Institute (AU)
- Corresponding author
- Roehrer, Erin
- Venue
- Informatics for Health and Social Care
- Publisher
- Informa UK Limited
- Published
- 2013-08-19
- Volume
- 38
- Issue
- 4
- Pages
- 354-365
- ISSN
- 1753-8157 (ISSN-L)
- 1753-8165
- OpenAlex
- W1980977136
- Cited by
- 20
- References
- 9
- Citations by year
- 2024: 1 · 2023: 2 · 2022: 1 · 2021: 1 · 2020: 1 · 2019: 4 · 2018: 2 · 2017: 5 · 2016: 1 · 2015: 1 · 2014: 1
- FWCI
- 1.81
- Type
- journal article
- Language
- en
- Open access
- green
- figshare.com
- Licence
- cc-by
- Locations
- Informatics for Health and Social Care (publishedVersion)
- PubMed (publishedVersion)
- eCite Digital Repository (University of Tasmania) (submittedVersion)
- Figshare (submittedVersion, cc-by)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Keywords
- cystic fibrosis, self-management, perceived usability, remote patient support, peer support, information and communication technologies, geographic isolation, Tasmania
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Cystic Fibrosis, Humans, Infant, Information Systems, Middle Aged, Pilot Projects, Self Care, Tasmania, User-Computer Interface, Patient-Centered Care, Internet, Qualitative Research, Consumer Health Information, Young Adult
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