title: Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis.
abstract: OBJECTIVE
  To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis.
  
  
  BACKGROUND
  Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease.
  
  
  METHODS
  A Qualitative study which took place between 2007-2012.
  
  
  METHODS
  Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis.
  
  
  RESULTS
  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 struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures.
  
  
  CONCLUSIONS
  There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.
authors.affiliation: University Hospital of South Manchester NHS Foundation Trust, Manchester, UK.
authors.forename: Annette
authors.initials: A
authors.lastname: Duck
authors.forename: Lisa G
authors.initials: LG
authors.lastname: Spencer
authors.forename: Simon
authors.initials: S
authors.lastname: Bailey
authors.forename: Colm
authors.initials: C
authors.lastname: Leonard
authors.forename: Jennifer
authors.initials: J
authors.lastname: Ormes
authors.forename: Ann-Louise
authors.initials: AL
authors.lastname: Caress
mesh_terms: D006301:Health Services Needs and Demand; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy
keywords: IPF; diagnosis; experiences; idiopathic pulmonary fibrosis; nursing; oxygen; palliative care; quality of life; respiratory; symptoms