Patient expectations and experiences in idiopathic pulmonary fibrosis: implications of patient surveys for improved care.

For patients with idiopathic pulmonary fibrosis (IPF), prognosis is extremely poor and treatment options are limited. An improved understanding of the experiences and expectations of IPF patients could lead to better clinical management and patient satisfaction. A review of the literature found that diagnosis of IPF typically involved a protracted course including multiple evaluations. Patients felt that educational resources were inadequate and inaccessible. Overall, patients had reasonable expectations for IPF-specific therapies, and were enthusiastic about trying promising new therapies. Numerous domains of health and functioning identified by patients as important were impaired because of IPF. Existing patient-reported outcome instruments (including assessments of health-related quality of life) do not capture many of these domains or are irrelevant to patients with IPF, highlighting the need for an IPF-specific instrument. Patients treated in centers of excellence expressed greater satisfaction with quality of care and treatments, and also valued the opportunity to interact with other IPF patients.