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.