CFHealthHub: Complex intervention to support self-management in people with Cystic Fibrosis

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Project Leads: Dr Martin Wildman, Sheffield Teaching Hospitals/University of Sheffield Prof. Iain Buchan, Prof. John Ainsworth and Dr Pauline Whelan, The University of Manchester

In collaboration with Sheffield Teaching Hospitals and the University of Sheffield, The Farr Institute has developed a digital platform to support adherence to treatment in adults with Cystic Fibrosis (CF).

The Challenge

Cystic Fibrosis (CF) is an inherited disease affecting 10,000 people in the UK. In 2012 the average age of death for a CF patient was 28 years.

The lungs of people with CF are prone to infections, and daily physiotherapy and inhaled medications are needed to stay healthy. Around £30 million is spent annually on inhaled therapy but some studies have suggested that, on average, patients adhere to only 36% of their therapy as directed by their doctor.

People with CF who do not adhere to their medication cost the healthcare system significantly more than those who do, with most of the additional cost coming as a result of unscheduled emergency care and hospital admissions. This unscheduled emergency care is distressing for people with CF and their families.

Up to now, there has been no way for people suffering from CF and clinicians to understand how and when patients take their medication making it difficult for the health services to better support patients.

The Research

This research programme is funded by the National Institute for Health Research and involves:

  • Creating a solution in partnership with patients. TheCFHealthHub website and mobile app were co-designed with patients, clinicians and researchers
  • A small pilot scheme with real patients designed to testacceptability of the CFHealthHub at 2 CF centres in the UK
  • A larger multi-centre trial that will recruit 800 patients that willseek to reduce the non-adherence of treatment by encouraging more patients to take medication as directed by their doctor
  • An evaluation of the economic value of the project and thepotential cost savings to the NHS
  • Development of a new CF data resource that could be used by researchers to further advance treatments for PWCF

The Results

The project is currently being trialled at 2 CF centres in the UK with a further randomised controlled trial launching at 20 centres in September 2017.

Once complete, health data scientists will analyse the data collected to see if the CFHealthHub can track and display information about how closely patients follow their prescribed treatment.

The analysis will ask if and how the project can support people with CF to better self-manage their condition and reduce symptoms that are aggravated when medication isn’t taken as prescribed. It will also determine whether unscheduled hospital admissions can be avoided and whether the project can demonstrate how this new intervention framework may offer important cost-savings for the NHS.

The Impact

For the first time in the UK, CFHealthHub is able to visualise electronic data from different kinds of nebulisers used in the treatment of CF. This information will be displayed to CF patients and clinicians in real-time.

By working with patients, researchers have been able to design a framework that aims to change the behaviour of People with CF by providing personalised tools to support self-management.

By encouraging patients to stick to their treatment, CFHealthHub aims to reduce sudden outbursts of symptoms and subsequent visits to emergency care services. This has important implications for individuals and significant cost implications for the NHS, where the costs are very high. Lessons learned from the CFHealthHub project can be used across many other long term conditions where patients struggle to stick to the treatment plans.

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Enquiries to Nina Hayes-Thompson, Communications Coordinator, Health eResearch Centre,