title: Pilot evaluation of web enabled symptom monitoring in cystic fibrosis.
abstract: 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.
  
  
  CONCLUSIONS
  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.
authors: eHealth Services Research Group, School of Computing & Information Systems, University of Tasmania , Hobart , Australia .
authors: Erin
authors: E
authors: Roehrer
authors: Elizabeth
authors: E
authors: Cummings
authors: Sean
authors: S
authors: Beggs
authors: Paul
authors: P
authors: Turner
authors: Jenny
authors: J
authors: Hauser
authors: Nicole
authors: N
authors: Micallef
authors: Leonie
authors: L
authors: Ellis
authors: David
authors: D
authors: Reid
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D054626:Consumer Health Information; D003550:Cystic Fibrosis / Q000473:pathology*; D006801:Humans; D007223:Infant; D007256:Information Systems; D020407:Internet; D008875:Middle Aged; D018802:Patient-Centered Care; D010865:Pilot Projects; D036301:Qualitative Research; D012648:Self Care; D013648:Tasmania; D014584:User-Computer Interface; D055815:Young Adult