Tuesday, 23 December 2014

Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis (IPF)

Annette Duck, MRes BSc RGN, Interstitial Lung Disease Specialist Nurse1
L G Spencer, MB ChB, Chest Consultant2
Simon Bailey, MD, Chest Consultant3
Colm Leonard, M.D, Consultant4
Jennifer Ormes, BSc, Lung Physiologist4
Ann-Louise Caress, PhD RGN RHV, Professor of Nursing4,5

1University Hospital of South Manchester, NHS Foundation Trust, Manchester, UK
2Aintree University Hospital, NHS Foundation Trust, Liverpool, UK
3Central Manchester University Hospitals, NHS Foundation Trust, Manchester, UK
4University Hospital of South Manchester, NHS Foundation Trust, Manchester, UK
5University of Manchester, UK


Idiopathic Pulmonary Fibrosis (IPF), previously known as cryptogenic fibrosing alveolitis (CFA) is a chronic, rapidly progressive, incurable, lung disease that currently has a mean life-expectancy of 2-4 years from diagnosis. The 5 year survival rate is estimated to be between 20-40% which is worse than most cancers. Despite this, patients with IPF have many unmet diagnostic and support needs as this research illustrates. If this was a cancer, patients could expect an urgent referral pathway to specialists who are familiar with their condition, be offered the latest treatment and given priority in the form of NHS available support.

The UK NHS is in the process of developing regional Interstitial Lung Disease (ILD) networks which will aim to deliver specified services that should improve the national delivery of ILD care. Until regional ILD networks have been fully developed patients may continue to experience the problems outlined in this research with inaccurate diagnosis and ad hoc manner of treatment and support depending upon local service provision.

This research tells in patients' own words what it is like to be diagnosed and live with IPF, illustrating that there is a general lack of knowledge amongst healthcare practitioners, trivialisation of symptoms and adds to the growing body of evidence of inadequate service provision in the UK for patients with IPF.


Reference

Duck A, Spencer LG, Bailey S, Leonard C, Ormes J, Caress A-L (2014) Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis (IPF). Journal of Advanced Nursing. DOI:10.1111/jan.12587
OnlineOpen article free to view

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