Idiopathic pulmonary fibrosis (IPF) is a chronic, persistent lung condition affecting over 32,000 people in the UK alone. This condition causes scarring of the lung tissue, leading to breathlessness and fatigue.
It is often associated with gastric reflux and cough, and may leave the patient feeling more disabled after each exacerbation or ‘flare’. Lung transplantation remains the only treatment offering any possibility of extending life for patients with IPF.
New antifibrotic medication can slow disease progression and other treatments such as medication, oxygen and pulmonary rehabilitation help to relieve symptoms.
Anne-Marie Russell, a National Institute for Health Research (NIHR) clinical doctoral research fellow working with IPF patients at Royal Brompton Hospital, is developing a patient-reported outcome measure specifically for patients diagnosed with IPF (IPF PRoM). This will enable health status for patients diagnosed with IPF to be measured in a robust way.
The Pulmonary Fibrosis Trust (UK), which aims to provide personal support to people affected by IPF, has already supported this study through hosting a link to a survey on its Facebook page.
In addition, during IPF week (17 to 25 September 2016) the Pulmonary Fibrosis Trust has also presented Anne-Marie with a cheque for £6000 to support her innovative research in this area. This generous donation will support and empower patients to complete the IPF PRoM questionnaire and record their health status electronically.
Anne-Marie highlights the importance of this award: “This generous donation from Pulmonary Fibrosis Trust is greatly appreciated. It is clear that IPF represents an important public health problem in the UK, and more research into its causes and treatment is needed”.
Read more information on how you can support the Pulmonary Fibrosis Trust