Updating (Reviewing and Printing) the Patient's Guide to Pulmonary Fibrosis.

Project Description

This is an annual follow up/annual review for the Project 3632727: Development And Publication Of The Booklet For The Pulmonary Fibrosis (disease With A Degree Of Similarity To Coronavirus Disease).


Chronic diseases associated with fibrosis present a challenge for healthcare; two of them are idiopathic pulmonary fibrosis (IPF) and lymphoedema. IPF is a form of lung disease in which scarring occurs (with no known cause) leading to increased breathing difficulties.
More than 3 million people aged 70-75 worldwide suffer from this disease and it is the most common interstitial lung disease in the UK with an incidence of around 7 cases per 100,000 people. Whilst there are antifibrotic drugs such as pirfenidone and nintedanib available, there is no treatment to stop the scarring. Symptoms of IPF include a persistent dry cough, tiredness, weight loss and clubbed fingers. Most of these symptoms are also present in COVID-19 infection. Hence, it is important that clinicians and patients are educated and understand the differences between the two diseases so that a correct treatment plan is devised and so that the patients can give informed consent.
Before 2020, in the Hull University Teaching Hospitals NHS Trust there was no resource for patients in the Respiratory Medicine department other than a 'Home Ventilation Information for Patients' leaflet while other departments have multiple resources. This highlighted the need of educating patients especially as the Yorkshire and Humber region has had rates higher than those in England for under 75 mortality rate from respiratory disease in 2015-2016 (39.7 vs 43.3/100,000). My research group focuses on understanding the role of pathogenesis of chronic diseases and works closely with clinicians in Hull and nationwide. In 2020, together with one of University of Hull interns Miss Karolina Jagielka, Dr Simon Hart and our PhD student Mr Eamon Faulkner, we developed a booklet for IPF awareness in Hull and involved patients, public and clinicians to improve the quality of the booklet. The booklet has been published
https://hull-research.worktribe.com/record.jx?recordid=3666470
and disseminated with support of Pulmonary Fibrosis Trust. This allowed knowledge exchange as it has become an easily accessible resource with key information, which begun to have a positive impact on the community. The requested in this application funding is required for covering the costs of the review and printing of the second edition of this booklet.