Support adherence to preventative inhaled therapy via habit formation in people with cystic fibrosis

In long-term conditions such as cystic fibrosis (CF), adherence to medicine regimens is an important aspect of management yet is typically unmeasured and invisible.

In CF, adherence to preventative inhaled therapy is associated with better outcomes, but adherence in the UK is estimated at 30-40%. A 2011 electronic data capture study demonstrated that whilst self-reported adherence to preventative inhaled therapy in CF was around 80%, it was only 36% when objective nebuliser usage data was captured electronically.

Situation

People with CF report struggling to adhere because of the burden of multiple daily treatments. Interventions were needed to help people with CF address this burden whilst maintaining the effectiveness of treatment.

CF clinicians need access to accurate adherence data to support sound clinical decision-making. The invisibility of adherence means that if a person with CF deteriorates, clinicians cannot distinguish treatment failure, which would trigger a change in treatment or diagnostic reassessment from inadequate adherence. This could be addressed by supporting habits that promote adherence.

Aspiration

• Capture and display date- and time-stamped nebuliser usage data to give people with CF and clinicians access to objective adherence data (making the invisible visible).
• Develop a clinician-delivered intervention, to support people with CF to develop habits of nebuliser usage, supported by a digital platform with additional behaviour change resources. Habits reduce burden by creating automaticity.
• To create a full learning health system that provides actionable data for continuous improvement across a community of practice. Learning health system activities include real-time health technology assessments, local and regional quality improvement, observational studies, and medicine optimisation.

Solution and impact

The CFHealthHub learning health system is device agnostic and currently interoperable with both nebulisers capable of electronic data capture available in the UK. The nebuliser usage data are presented to patients and clinicians on a co-produced app available on electronic devices including smartphones.

Clinicians using CFHealthHub are trained to deliver a behaviour change intervention, helping people with CF to develop habits supporting sustained nebuliser use. Access to objective adherence data helps both people with CF and their clinicians monitor progress with habit formation allowing clinicians to support habit repair as required to sustain life-long behaviour change.

By having access to accurate, objective adherence data, clinicians can react appropriately to changing health states and make a data-informed diagnosis about the cause of the health state. If the health state is associated with suboptimal adherence, the clinicians may be dissuaded from immediately switching to a more expensive or complex regimen and focus on supporting habit formation. If a person with CF deteriorates despite adequate adherence, then clinicians can feel supported to investigate for new emerging pathology or adjust the treatment regimen.

CFHealthHub is used in 15 adult CF Centres, representing >60% of adult CF centres in England. Together, these centres form the CFHealthHub learning health system, allowing clinicians across centres to collaborate in improvement work, medicines optimisation and clinical research with a culture of continuous improvement and system optimisation. CFHealthHub is currently recognised as the only condition-specific, full learning health system with national reach in the UK.

Functionality

• CFHealthHub receives data from a nebuliser, and stores this in a secure cloud-based server.
• Patient-level data from the CFHealthHub server is made available on app and web platforms for use by clinicians and people with CF.
• CFHealthHub is designed for integration with other NHS systems.

Capabilities

• Data capture using CFHealthHub is passive, in that people with CF use their nebuliser and data is automatically captured and then made available on the CFHealthHub web portal via smartphones and other digital devices.
• CFHealthHub makes date- and time-stamped nebuliser usage data available through electronic data capture and displays real-time objective adherence measurements.
• CFHealthHub provides a platform with access to resources, such as goal setting, action plan creation, problem-solving toolkits, and educational modules, which people with CF can access to support them building habits of nebuliser usage. The principles of behaviour change are not specific to CF and could benefit people with other long-term conditions to develop habits of self-care.
• CFHealthHub cannot currently discern which medicine has been used for a specific recorded dose of treatment, as neither nebuliser records this information. However, treatment regimens are not complex and discussing data with patients allows treatment regimens to be understood.

Scope

CFHealthHub:

• is accessible 24 hours a day, 7 days a week.
• can be accessed from any mobile device with the installed app or a web browser.
• can be accessed on devices with iOS or Android operating systems.

Key learning points

• Users who incur no additional burden in using the system over and above usual care value passive data capture.
• Providing data alone is not sufficient to help patients to develop habits to take their nebulised medicine. These data facilitate the delivery of tailored behaviour change intervention to help people with CF develop habits for treatment-taking.
• The CFHealthHub full learning health system embeds behaviour change which also enables clinicians to pay attention to data about self-care. This required careful system re-design so that a clinic visit includes lung function, weight and adherence. This enables clinicians to pay attention within an existing structure to what would otherwise be out of sight and out of mind.

Digital equalities

• Supplying the data for the NICE CF Quality Indicators will produce insights into nationwide inequality.
• The data is captured passively via automatic electronic data transfer technology. There is no requirement for people with CF to actively access a web or app-based platform after their account has been registered.
• People with CF do not need home internet access to benefit from CFHealthHub, but they do require mobile data network signal for one of the two nebuliser devices currently available.

Key figures

• 16/23 adult CF centres in England have access to CFHealthHub (Aug 2022).
• 1526 people with CF are registered with CFHealthHub, representing approximately 30% of the UK Adult CF population (Aug 2022).
• The 607-participant RCT is the first trial in CF to demonstrate a significant and sustained improvement in adherence accompanied by a significant fall in the burden and effort of self-care. There was also a significant increase in habit and patient activation, and no impact on the safety measures of anxiety and depression. The study showed a non-significant reduction in exacerbations and a non-significant improvement in percent predicted forced expiratory volume in 1 second (ppFEV1), which is an important measure of lung function in CF. However, a significant 3% improvement in ppFEV1 was seen in participants with the lowest adherence at study entry. A post-trial editorial commented that ppFEV1 decline in the intervention group was only 0.1% compared to a decline of 1.4% in the control group.

Find out more

CFHealthHub website

Key contact

Martin Wildman, Adult CF Consultant, Northern General Hospital, Sheffield

martin.wildman3@nhs.net