Patient experiences with pulmonary fibrosis.
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.
Collard
Harold R
HR
Department of Medicine, San Francisco General Hospital, University of California-San Francisco, 1001 Potrero Avenue, San Francisco, CA 94110, USA. hcollard@medsfgh.ucsf.edu
Tino
Gregory
G
Noble
Paul W
PW
Shreve
Mark A
MA
Michaels
Maureen
M
Carlson
Bruce
B
Schwarz
Marvin I
MI
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