Disease area impacted
Cystic Fibrosis (CF) is an inherited disease affecting 10,000 people in the UK.
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.
Costs to the healthcare system of poor adherence are substantial, 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.
Until recently, there was no way for people with CF and their clinicians to see how and when people take their inhaled medications. This made it very difficult for the health services to support people with CF to adhere better to their treatments.
CFHealthHub aims to optimise long-term Cystic Fibrosis care by sustainably reducing preventable unplanned care and wasted spending on high-cost drugs, thereby increasing quality of care, contributing to better health outcomes and reducing the cost of healthcare in the U.K.
START: MARCH 2015
END: MARCH 2020
Funded by: NIHR Programme grants
This research programe was initially funded by a five-year programe grant from the National Institute for Health Research (NIHR: RP-PG-1212-20015), with subsequent funding from NHS England and other sources (total investment approx. £10M since 2015), and has included:
· Co-creating a digital health solution in partnership with people with CF, researchers, software engineers, clinicians, physiotherapists behavior change psychologists, statisticians and many others aimed at supporting adherence to treatment in people with CF.
· A two-armed, parallel-group, open-labelled Randomised Controlled Trial at 19 CF centres, testing the effectiveness of the intervention to support adherence to treatment in adults with CF.
· A health economics evaluation of streamlined medicine delivery and the potential cost savings to the NHS.
· Development of an NHS Digital approved national indictor for CF.
· A dashboard for each centre using CFHealthHub showing their results against national indicators to enable ongoing quality improvement
· A CF-specific mobile app to support people with CF with their dietary requirements
Adherence data from chipped nebulisers, website engagement data from CFHealthHub, primary outcomes and secondary outcomes collected by unit researcher and qualitative assessments from process evaluation.
Qualitative research is being analysed using framework analysis informed by the COM-B model, quantitative data using parametric and non-parametric statistics.
Clinical teams will learn how to support and maintain behaviour change in people with chronic disease. In addition related work will start to understand how habits are formed and maintained. Though this understanding is developed in CF it will have wide applicability in other long term diseases.
– is now in widespread use (>60% of all CF Centres) across the UK.
– is a system-wide digital community of practice, a ‘learning health system’, that provides evidence for personalised care and medicines optimisation.
– creates value with over 25% (and growing) of UK adults with CF granting consent to testing digital and behavioural interventions at speed, allowing us to implement research breakthroughs into clinical practice by sharing learning through an established community of practice.
– Enables the NHS to sustainably shift long-term CF care from expensive, hospital-based reactive care to affordable community-based prevention. This reduces waste across the whole system and maximizes U.K. international influence in multi-modality, multi-morbid conditions critical to value-based healthcare.
– Aims to be device-agnostic and to support multiple kinds of medical devices used in CF care (e.g. nebulisers, spirometers…)
– Is generating global replication interest, especially from USA’s CF Foundation, funder of the research leading to nearly every CF drug
– Offers a flexible and comprehensive digital behaviour change platform that can be adapted and refined for other long term health conditions
Hind, D., Drabble, S.J., Arden, M.A. et al. Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study. BMC Pulm Med 19, 77 (2019). https://doi.org/10.1186/s12890-019-0834-6
Tappenden P, Sadler S, Wildman M. An Early Health Economic Analysis of the Potential Cost Effectiveness of an Adherence Intervention to Improve Outcomes for Patients with Cystic Fibrosis. Pharmacoeconomics. 2017;35:647–59. https://doi.org/10.1007/s40273-017-0500-x.
Arden MA, Drabble SJ, O’Cathain A, Hutchings M, Wildman M. WS16.1 ACtiF study: understanding adherence to nebuliser treatment in adults with cystic fibrosis using the theoretical domains framework. J Cyst Fibros. 2016;15:S26.
Find out more at www.cfhealthhub.com
Dr Pauline Whelan
Dr John Ainsworth
Prof Iain Buchan
Prof Maddy Arden
Prof Alicia O’Cathain
Prof Stephen Walters
Dr Danny Hind
Prof Jon Nicholl
Dr Martin Wildman
Prof Susan Michie