A feasibility adherence study in adults with cystic fibrosis

• Research type

  Research Study

• Full title

  A feasibility study in adults with cystic fibrosis aiming to increase adherence to inhaled treatments by making treatment visible and support behaviour change through problem solving and implementation intention plans

• IRAS ID

  128861

• Contact name

  Rachael Curley

• Contact email

  rachael.curley@sth.nhs.uk

• Research summary

  Cystic Fibrosis (CF) is an inherited disease which causes the lungs to become infected with bacteria and the digestive system to malabsorb food. The median age at death is 26 and most people with CF (PWCF) die of respiratory failure. PWCF need to take daily treatment to keep their lungs healthy and maintain weight. When intelligent nebulisers, which administer inhaled treatments, are used to count the number of doses of treatment taken it is found that the median adherence is only 36%. PWCF taking a low proportion of prescribed treatment are more likely to develop lung infections (exacerbations) which are associated with lung damage and reduced survival. PWCF often cannot remember how much treatment they have taken and self-report is unreliable. This means that adherence is invisible in clinical practice and if you can’t measure it you can’t manage it.

  This study has two parts and PWCF can take part in the first part without taking part in the second.
  In the first part we will invite PWCF to have treatment measured using intelligent nebulisers so that adherence data will be available in clinic like other routine measures such as lung function or weight. We will also ask permission to collect information about individual characteristics to understand what factors are associated with adherence. In the second part PWCF will be shown how to view their adherence data on a website called ’cfhealthhub’. We will ask PWCF how well they understand the data presentation format used. In addition PWCF will be offered help to solve problems that make treatment difficult and coached via the ’cfhealthhub’ website to form habits that will make adherence an automatic part of their lives. The second part of the study is a single centre feasibility study that will inform a subsequent ten centre cluster randomised pilot trial.

• REC name

  Yorkshire & The Humber - South Yorkshire Research Ethics Committee

• REC reference

  13/YH/0181

• Date of REC Opinion

  3 Jun 2013

• REC opinion

  Favourable Opinion