title: Patient experiences with pulmonary fibrosis.
abstract: This survey describes the experiences of patients diagnosed with pulmonary fibrosis, focusing on the issues of patient education and resources. A survey of 52 defined-choice and open-ended questions regarding the diagnosis and management of pulmonary fibrosis was delivered. A total of 1448 respondents comprised the study group. Two-thirds of respondents reported a clear lack of information and resources on pulmonary fibrosis at the time of diagnosis. Less than half of respondents reported they felt well-informed about treatment options, the role of supplemental oxygen, pulmonary rehabilitation, and transplantation. These results suggest there is a substantial need for improved patient education regarding the diagnosis and management of pulmonary fibrosis.
authors.affiliation: Department of Medicine, San Francisco General Hospital, University of California-San Francisco, 1001 Potrero Avenue, San Francisco, CA 94110, USA. hcollard@medsfgh.ucsf.edu
authors.forename: Harold R
authors.initials: HR
authors.lastname: Collard
authors.forename: Gregory
authors.initials: G
authors.lastname: Tino
authors.forename: Paul W
authors.initials: PW
authors.lastname: Noble
authors.forename: Mark A
authors.initials: MA
authors.lastname: Shreve
authors.forename: Maureen
authors.initials: M
authors.lastname: Michaels
authors.forename: Bruce
authors.initials: B
authors.lastname: Carlson
authors.forename: Marvin I
authors.initials: MI
authors.lastname: Schwarz
mesh_terms: D000368:Aged; D001294:Attitude to Health; D005260:Female; D006302:Health Services Research; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000592:standards; D010358:Patient Participation; D017060:Patient Satisfaction; D011658:Pulmonary Fibrosis / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D014481:United States