title: The care needs of patients with idiopathic pulmonary fibrosis and their carers (CaNoPy): results of a qualitative study.
abstract: BACKGROUND
  Idiopathic pulmonary fibrosis (IPF) is a chronic, fibrotic interstitial lung disease of unknown origin. It has a median survival of three years but a wide range in survival rate which is difficult to predict at the time of diagnosis. Specialist guidance promotes a patient centred approach emphasising regular assessment, information giving and supportive care coordinated by a multidisciplinary team (MDT). However understanding of patient and carer experience across the disease trajectory is limited and detailed guidance for MDTs on communication, assessment, and triggers for supportive and palliative interventions is lacking. This study addresses uncertainties relating to care needs of patients and carers at different stages of the IPF disease trajectory.
  
  
  METHODS
  Following ethical approval a multi-centre mixed-methods study recruited participants with IPF at four stages of the disease trajectory. Qualitative analysis was used to analyse 48 semi-structured interviews with patients (27) and paired carers (21).
  
  
  RESULTS
  Patients and carers outlined key elements of MDT activity capable of having significant impact on the care experience. These were structured around: Focus of clinical encounters. Timely identification of changes in health status and functional activity. Understanding of symptoms and medical interventions. Coping strategies and carer roles.
  
  
  CONCLUSIONS
  Patients diagnosed with IPF have a clear understanding of their prognosis but little understanding of how their disease will progress and how it will be managed. In depth analysis of the experiences of patients and carers offers guidance for refining IPF clinical pathways. This will support patients and carers at key transition points in line with National Institute for Health and Care Excellence (NICE) guidance.
authors.affiliation: Cardiff University School of Medicine, Marie Curie Palliative Care Research Centre, Heath Park, Cardiff, CF14 4YS, UK. sampsonc2@cf.ac.uk.
authors.forename: Cathy
authors.initials: C
authors.lastname: Sampson
authors.affiliation: Department Respiratory Medicine, University Hospital Llandough, Cardiff, UK. Ben.Hope-Gill@wales.nhs.uk.
authors.forename: Ben Hope
authors.initials: BH
authors.lastname: Gill
authors.affiliation: Swansea University, School of Medicine, Swansea, UK. nkharrison@doctors.org.uk.
authors.forename: Nicholas Kim
authors.initials: NK
authors.lastname: Harrison
authors.affiliation: Cardiff University School of Medicine, Marie Curie Palliative Care Research Centre, Heath Park, Cardiff, CF14 4YS, UK. NelsonA9@cardiff.ac.uk.
authors.forename: Annmarie
authors.initials: A
authors.lastname: Nelson
authors.affiliation: Cardiff University School of Medicine, Marie Curie Palliative Care Research Centre, Heath Park, Cardiff, CF14 4YS, UK. Anthony.Byrne2@wales.nhs.uk.
authors.forename: Anthony
authors.initials: A
authors.lastname: Byrne
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D036301:Qualitative Research; D012720:Severity of Illness Index