Patient experiences with pulmonary fibrosis

Respir Med. 2007 Jun;101(6):1350-4. doi: 10.1016/j.rmed.2006.10.002. Epub 2006 Nov 14.


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.

MeSH terms

  • Aged
  • Attitude to Health*
  • Female
  • Health Services Research
  • Humans
  • Male
  • Middle Aged
  • Patient Education as Topic / standards
  • Patient Participation
  • Patient Satisfaction
  • Pulmonary Fibrosis / diagnosis
  • Pulmonary Fibrosis / psychology*
  • Pulmonary Fibrosis / therapy
  • United States