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CFHealthHub

Title

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

Project Overview

Cystic Fibrosis (CF) is an archetypal chronic disease where daily self-management has a big impact on survival, quality of life, and the use of unscheduled hospital care. This programme uses a coherent conceptual framework of behaviour change (COM-B) to develop an intervention to build knowledge, skills, and confidence in self-management supported by real time feedback of daily self-management with highly effective inhaled preventative therapy. The feedback data is caught in real time chipped nebulisers that transfer data to the cloud.

The programme is structured within the MRC complex interventions framework and involves:

  • Intervention co-production
  • Feasability pilot in 2 centres
  • Multi-centre RCT that will recruit just fewer than 800 patients with a primary outcome of exacerbation reduction and secondary outcomes that include adherence rate and FEV1
  • Health economic evaluation linked to RCT
  • Development of data observatory/data lab to allow centre learning, quality improvement, and pragmatic trials.

In addition the data lab will provide a “nudge testing” platform to test behaviour change interventions as scale. All phases of the programme include detailed process evaluation.

Start: March 2015

End: March 2020

Funded by: NIHR Programme grants

Disease area impacted

Cystic Fibrosis

Data Source

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.

Methodology

Qualitative research is being analysed using framework analysis informed by the COM-B model, quantitative data using parametric and non-parametric statistics.

Benefits

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.

Intended Outcomes

  1. CFHealthHub: a complex intervention that can be used to support adherence in CF.
  2. Evaluation of impact of a complex behaviour change intervention on the process measure of adherence and the outcome measure of exacerbations and Fev1.
  3. An understanding of the Health economics of supporting teams to deliver self-management support.
  4. CF Data lab: a CF data observatory to allow centre learning, quality improvement and pragmatic trials. In addition the data lab will provide a “nudge testing” platform to test behaviour change interventions at scale.

Researchers Involved

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