Diffuse Lung Disease: Care of the Patient with IPF |

Understanding the Patient Journey of Interstitial Lung Disease Diagnosis: The Intensity Survey FREE TO VIEW

Gregory Cosgrove, MD; Pauline Bianchi, BSN; Jeanne Lobodo, MBA; Sherry Danese, MBA; David Lederer, MD
Author and Funding Information

Veracyte, South San Francisco, CA

Copyright 2016, American College of Chest Physicians. All Rights Reserved.

Chest. 2016;150(4_S):468A. doi:10.1016/j.chest.2016.08.482
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SESSION TITLE: Care of the Patient with IPF

SESSION TYPE: Original Investigation Slide

PRESENTED ON: Wednesday, October 26, 2016 at 08:45 AM - 10:00 AM

PURPOSE: The objective of the INTENSITY survey was to advance the understanding of respondents’ diagnostic experiences with interstistial lung diseases (ILDs), including idiopathic pulmonary fibrosis (IPF). The survey was designed to trace the path that respondents took to diagnosis, identify obstacles they faced, and gauge the emotional impact of their journey. Results from the INTENSITY survey will help us more fully understand respondents’ diagnostic experiences so we can further efforts to improve timely diagnosis and treatment of ILDs.

METHODS: We administered a 25-minute quantitative online survey from August 14-26, 2015. Of the 1,152 respondents screened to ensure they were US residents, and had been diagnosed with an interstitial lung disease, 600 met criteria and completed the survey. Recruitment was accomplished through two channels: email invitations sent to 16,000 Pulmonary Fibrosis Foundation (PFF) members and an open invitation to participate through the pulmonary fibrosis community website.

RESULTS: Shortness of breath (77%) and cough (53%) were the most common early symptoms in ILD patients as well as 38% reporting fatigue. 25% of respondents saw their primary care physician once before being referred to a specialist, however 61% of respondents saw their primary care physician >2 times before referral to a pulmonologist. IPF was the most common diagnosis reported by 47% of respondents. An accurate diagnosis was achieved after a median of 7 months and after a median of 3 physician visits. Fourteen percent of respondents saw more than 6 physicians before receiving a correct diagnosis. For 28% of respondents the diagnostic process took over 2 years. Misdiagnosis occurred in 56% of respondents. The median time from symptom onset to correct diagnosis in these patients was 11 months, however 49% of respondents carried an incorrect diagnosis for 1 to 10 years. Thirty-eight percent were misdiagnosed more than twice, most frequently with asthma, pneumonia, bronchitis, and allergies. Diagnostic testing was common and often repeated. Sixty-one percent underwent invasive procedures (bronchoscopy or surgical lung biopsy), 45% of respondents had a surgical lung biopsy alone and 21% endured both procedures. Sixty-four percent of respondents acknowledged experiencing stress due to a lack of understanding about their disease, with 51% believing that their symptoms were associated with aging. Seventy-three percent of respondents felt isolated because friends and family were not familiar with ILD or IPF. This was compounded by time away from families, friends and personal life related to the diagnostic odyssey experienced by 84% of respondents.

CONCLUSIONS: During their diagnostic evaluation, adults with ILD endure misdiagnoses, long delays in achieving a correct diagnosis, and emotional hardships.

CLINICAL IMPLICATIONS: The barriers to a timely, accurate ILD and IPF diagnosis might be overcome with a more focused effort dedicated to disease and symptom awareness as well as tools to improve diagnostic accuracy.

DISCLOSURE: Pauline Bianchi: Employee: Employed by Veracyte Sherry Danese: Consultant fee, speaker bureau, advisory committee, etc.: Paid to write survey and analyze data The following authors have nothing to disclose: Gregory Cosgrove, Jeanne Lobodo, David Lederer

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