CF patient experience of long-term domicilliary NIV
Research type
Research Study
Full title
An investigation of the experience of adults with Cystic Fibrosis using long-term domiciliary non-invasive ventilation.
IRAS ID
225296
Contact name
Jocelyn H Choyce
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
0 years, 5 months, 15 days
Research summary
Non-invasive ventilation (NIV) is a commonly used intervention in patients with Cystic Fibrosis (CF) to assist breathing by the use of positive pressure. NIV was initially used to enable CF patients to survive until they were able to have a lung transplant (Madden et al 2002)but it is now being introduced earlier to those patients with signs and symptoms of respiratory failure. NIV is thought to improve sleep quality, give better daytime energy levels and allow more activities to be completed with less fatigue. Many studies have explored the effect of NIV on clinical outcomes (Moran et al 2013, Young et al 2007 for example), however, to date no studies have been conducted to investigate the patient experience of using long term NIV and its influence on quality of life and treatment burden. The aim of this study is to address this deficit in the evidence.
The study will explore the positive and negative experiences of 6-10 adult CF patients from one West Midlands centre who use long-term NIV at home. Patients will discuss their experiences in a one-to-one interview with the researcher.REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
17/EM/0321
Date of REC Opinion
11 Aug 2017
REC opinion
Favourable Opinion