title: The palliative care needs of patients with idiopathic pulmonary fibrosis: A qualitative study of patients and family caregivers.
abstract: OBJECTIVE
  To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers.
  
  
  BACKGROUND
  IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member.
  
  
  METHODS
  Thematic analysis of focus group content was obtained from thirteen participants.
  
  
  RESULTS
  Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources.
  
  
  CONCLUSIONS
  Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC.
authors.affiliation: The University of Pittsburgh Dorothy P. & Richard P. Simmons, Center for Interstitial Lung Disease at UPMC, Pulmonary, Allergy & Critical Care Medicine, NW 628, UPMC Montefiore, 3459 Fifth Avenue, Pittsburgh, PA 15213, USA. Electronic address: lindellko@upmc.edu.
authors.forename: Kathleen Oare
authors.initials: KO
authors.lastname: Lindell
authors.affiliation: Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA.
authors.forename: Dio
authors.initials: D
authors.lastname: Kavalieratos
authors.affiliation: The University of Pittsburgh Dorothy P. & Richard P. Simmons, Center for Interstitial Lung Disease at UPMC, Pulmonary, Allergy & Critical Care Medicine, NW 628, UPMC Montefiore, 3459 Fifth Avenue, Pittsburgh, PA 15213, USA.
authors.forename: Kevin F
authors.initials: KF
authors.lastname: Gibson
authors.affiliation: UPMC Palliative and Supportive Institute, Iroquois Building, 3600 Forbes Ave, Pittsburgh, PA 15213, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Tycon
authors.affiliation: University of Pittsburgh School of Nursing, 336 Victoria Building, 3500 Victoria Street, Pittsburgh, PA 15261, USA.
authors.forename: Margaret
authors.initials: M
authors.lastname: Rosenzweig
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000592:standards*; D005190:Family; D005260:Female; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment / Q000592:standards*; D010166:Palliative Care / Q000592:standards*; D011787:Quality of Health Care
keywords: Advance care planning; Caregivers; Idiopathic pulmonary fibrosis; Palliative care; Symptom burden