CFHealthHub Data Observatory

 Cystic Fibrosis / Posted 11 months ago

Cystic Fibrosis (CF) is an inherited disease affecting 10000 people in the UK with an average age at death of 28 years in 2012. The lungs of people with CF (PWCF) are prone to infections. Daily physiotherapy and inhaled medications are needed to stay healthy. Around £30 million is spent annually on inhaled therapy but average adherence has been shown to be only 36%. Data suggest that adherence is better in younger children but of the most of the PWCF are now adults. PWCF who collect less than 50% of their medication cost the healthcare system significantly more than PWCF who collect more than 80% and most of the additional cost results from unscheduled emergency care and hospital admission. This unscheduled emergency care is distressing for PWCF and their families. Current research investigating whether adult PWCF can build successful, self-management, treatment habits using dose-counting nebulisers to collect adherence data, displaying this data on a website (CFHealthHub) and using a behaviour change toolkit, supported by a health professional, is ongoing. The aim of this study and the CFHealthHub is to help facilitate quality improvement projects using data from CFHealthHub about participants adherence and participant’s relationship with the team.

  • Study start date : 25/05/2017
  • Study end date : 31/03/2024
  • Wales-Based Study Contact : please speak to your clinician

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