CFHealthHub Data Observatory

 Cystic Fibrosis / Posted 2 months ago

Background and study aims:

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. The study also aims to build an understanding of the process of implementing CFHH into routine practice.

 

What does the study involve?

Participants receive a new chipped nebuliser, or have their existing nebuliser adapted to communicate with CFHealthHub. They are given a log in to the CFHealthHub system and shown how to use their device and the CFHealthHub website, by a member of their care team. This includes how to turn on and off data sharing with their clinical team. Participants are then able to use their nebuliser as normal, with the support of CFHealthHub. CFHealthHub automatically collects data on the participants’ use of their chipped nebuliser, specifically the time of use and duration of inhalation. The data is stored in the secure CFHealthHub server. To provide a tailored CF toolkit participants will periodically complete a questionnaire about the challenges of taking their medication.

  • Inclusion Criteria :
    • 1. Diagnosed with CF and with data within the CF registry
    • 2. Aged 16 years and above
    • 3. Taking inhaled mucolytics or antibiotics via a chipped nebuliser (e.g. eTrack or I-Neb) or able and willing to take via eTrack or I-Neb
  • Exclusion Criteria :
    • Lacking in capacity to give informed consent
  • Study end date : March 2024
  • Wales-Based Study Contact : Please speak with your clinician
  • Principal Investigator : Ms. Carla Girling (University of Sheffield)
Contact details

The All Wales Cystic Fibrosis CentreUniversity Hospital Llandough,Cardiff,CF64 2XX  Show Phone Number c.girling@sheffield.ac.uk

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