AtOM-CF Study Part 2

  • Research type

    Research Study

  • Full title

    How can Adherence to Oral Medication be improved for the benefit of people with cystic fibrosis (AtOM-CF Study) (Part 2).

  • IRAS ID

    321012

  • Contact name

    Nicola J Shaw

  • Contact email

    N.J.Shaw@leeds.ac.uk

  • Sponsor organisation

    University of Leeds

  • Duration of Study in the UK

    0 years, 10 months, 12 days

  • Research summary

    Cystic fibrosis (CF) is a genetic illness that affects more than 10,500 people in the UK. It is life limiting, with average life expectancy around 47 years. Until recently treatment could only help control and reduce the effects of mucus build up.

    A new treatment is now available - tablets called modulators. They improve symptoms, stabilise the illness and prevent further damage to organs such as the lungs. People taking modulators as intended should live longer and with fewer periods of severe illness.

    Despite the positive health benefits, it appears that some people do not take modulators as prescribed. This not only affects the life of the person with CF, but also NHS resources as frequent admissions to hospital are needed. Understanding the reasons for this are essential to maximise the health benefits of this new treatment.

    This study aims to find new ways to support and encourage the regular taking of this life-long treatment, as well as other regular medication. The study will be carried out in three parts over 3 years.

    In the second part of the study, we will conduct interviews in 20-30 who people take the new modulator medicines in adults (> 16 years) attending two CF centres in England (Leeds and Newcastle). Participants will be asked to bring photographs that they have taken to the interview, to show how the new modulators have changed their lives. This is to stimulate discussion.

    We will then work with people with CF and their clinical teams to devise new ways to support and encourage people with CF to take medicines, especially the new modulator medicines.

    This study is funded by Health Education England/NIHR as a clinical doctoral research fellowship.

  • REC name

    South West - Cornwall & Plymouth Research Ethics Committee

  • REC reference

    23/SW/0071

  • Date of REC Opinion

    16 May 2023

  • REC opinion

    Favourable Opinion