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Patients with IPF need help to understand their diagnosis

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People with idiopathic pulmonary fibrosis urgently need health professionals to understand the difficulties they face.

This is the conclusion of research published in the Journal of Advanced Nursing. The authors studied seventeen patients with moderate to advanced idiopathic pulmonary fibrosis and six of their informal carers were interviewed.

Three main themes were identified: ‘Struggling to get a diagnosis’; ‘Loss of the life I previously had’; and ‘Living with Idiopathic Pulmonary Fibrosis’. Patients reported that they struggled to get a diagnosis and to cope with a rapidly progressive, life limiting illness and few support structures.

Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a life expectancy of 2–4 years from diagnosis.

Duck A et al (2015) Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosisJournal of Advanced Nursing: 71(5),1055–1065.

 

More information on idiopathic pulmonary fibrosis

  1. Interstitial pulmonary fibrosis: care standards
  2. Care planning in idiopathic pulmonary fibrosis
  3. Management of idiopathic pulmonary fibrosis
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