Adults with cystic fibrosis take only 36% of their prescribed inhaled drugs, wasting millions in NHS spending on treatments that never reach the lungs. This matters because 30–50% of all NHS medicines are not taken as intended, costing £13–14 billion each year. For cystic fibrosis, patients who collect less than 50% of their medications incur higher healthcare costs from emergency care than those who collect more than 80%. Previous adherence interventions have failed because they used one-size-fits-all, single-component approaches. The research team will build a web portal called cfhealthhub that captures real-time adherence data from nebulisers and displays it to patients and clinicians. They will then develop a personalised toolkit—based on psychological theory—that diagnoses each patient’s specific barriers to adherence and delivers tailored strategies to overcome them. A randomised controlled trial of 560 patients across 10 CF units will test whether the toolkit improves adherence and is cost-effective. If successful, the toolkit could be embedded in CF Registry reports and linked to quality improvement initiatives across the UK. The manualised approach is designed to transfer to other long-term conditions, potentially improving adherence across the NHS.
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Patient and Public Involvement (PPI) The programme has been developed in collaboration with a PPI panel of people with Cystic Fibrosis (PWCF). This panel will work with the research team. One member is a co-applicant, and two members will be part of the management and steering groups. Aims The overall aim is to develop and evaluate a behaviour change intervention (BCI) which our PPI panel would like to call a "toolkit" to support adherence to medication in adults with Cystic Fibrosis. The objectives are (i) to develop a web-portal cfhealthhub to display adherence data to PWCF and clinicians, (ii) develop a toolkit that uses feedback of measured adherence data linked to personalised evidence based strategies to increase adherence, and (iii) test the cost effectiveness of the toolkit. Background and rationale Medicines are the biggest cost in the NHS after staff, costing £13-14 billion each year. Yet NICE reports that 30-50% of medicines are not taken as intended. £30 million was spent on high cost inhaled drugs for the 10,000 PWCF in the UK in 2012 yet studies in adults with CF suggest the median adherence to these drugs is only 36%. PWCF who collect less than 50% of their medicines have higher healthcare costs than PWCF who collect more than 80% due to increased use of emergency care. Systematic reviews suggest that adherence interventions have been relatively ineffective because they have tended to be one size fits all single component interventions. We will embed adherence measurement in routine care and develop a toolkit to support adherence that diagnoses individuals' barriers and produces a personalised intervention to support adherence. The lessons learned from this work will be transferable to the challenges of supporting adherence in long term conditions in the NHS as a whole. Research plan The programme will consist of three Work Packages. WP1 Build the IT infrastructure to capture adherence data from nebulisers. Develop a web-portal cfhealthhub to display adherence data to PWCF and clinicians. Co-produce the web-portal interface with patients and clinicians to facilitate maximum utility. WP2 Develop a toolkit based on psychological theory that can support PWCF to adhere to treatment. This will use feedback of measured adherence data from WP1, and personalised interventions to increase adherence. Manualise the BCI for use by physiotherapists and PWCF. WP3 Evaluate the toolkit from WP2. (i) Explore the feasibility and acceptability of the toolkit by undertaking observation and qualitative interviews with the physiotherapist and PWCF using the toolkit within a pilot trial in one CF unit. Test recruitment and data collection procedures in a pilot trial. (ii) Test the efficacy of the toolkit in an RCT of 560 patients in 10 CF Units. (iii) Undertake a process evaluation including observation and qualitative interviews with staff and PWCF to understand how the toolkit is implemented in practice. (iv) Model cost effectiveness. Dissemination & projected outputs The programme has been developed with the CF Trust a patient and clinician advocacy organisation which will disseminate the work to the CF community through its website and conference programme. In the future there is the potential for the development of adherence as a NHS indicator embedded in CF Registry reports and linked to quality improvement initiatives will facilitate the dissemination of adherence support within the CF community. The adherence toolkit manual will provide transferable learning to other long term conditions. Relevant expertise & experience of the research team The team links multi-disciplinary expertise including clinical understanding of CF, skills to roll out IT systems across the NHS, health services research including health economics, RCT design and process evaluation, and behaviour change expertise to understand how to build the habits of adherence. Input from a committed PPI panel will enable co-production at all levels
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