Results from national survey of 600 U.S. patients with interstitial lung disease (ILD) indicate that a substantial percentage suffer from diagnostic delays and misdiagnosis. The data was presented at the PFF Summit 2015: From Bench to Bedside, the PFF’s biennial international health care conference on pulmonary fibrosis (PF) held Nov. 12–14 in Washington, D.C.
ILD affects the tissue and space around the air sacs of the lungs that may result in the development of idiopathic pulmonary fibrosis (IFP), the most common form of ILD. In the United States and major European countries, approximately 175,000 to 200,000 patients are suspected of having ILDs each year. The disease has no known cure, but its progression could be slowed by means of medications.
From a diagnostic viewpoint, ILD/IPF are complicated diseases to diagnose because signs and symptoms are similar to a wide range of other common medical conditions. As a result, they require resources and different specialties that may have negative impact on the patients.
Commissioned by the Pulmonary Fibrosis Foundation (PFF), the INTENSITY survey aimed to determine the procedure and time needed for ILD/IPF patients to be diagnosed accurately, the difficulties encountered, and how these difficulties reflect on the patient’s physical and emotional states. The survey, which was conducted between August 14–26, 2015 by an independent healthcare-research organization called Outcomes Insights, used a quantitative online questionnaire given to a total of 600 ILD patients, 47% of which suffer from IPF.
The results suggested that diagnostic delays and misdiagnoses occur in substantial numbers of patients. From first-appeared symptoms to the final diagnosis, 42% of respondents indicated that the process lasted one year or more, for 25%, two years or more; and for 6% of respondents, six years or more. With respect to misdiagnosis, 55% stated that it occurred at least once and 38% at least twice. Among the 47% of patients reporting IPF, a median of three physicians were involved before diagnosis was reached. Consequently, 57% of these patients visited a physician more than once and 21% saw a primary care physician more than four times before a specialist.
The patients also underwent, on average, five chest X-rays, six pulmonary lung function tests, and two bronchoscopies before reaching diagnosis, and almost half of the survey participants endured invasive and potentially risky procedures like surgical lung biopsy. From the emotional standpoint, ILD patients felt frustration, isolation and loneliness due to encountered obstacles and financial costs. Among these, 43% felt lonely due to a lack of understanding from family/friends, 85% estimated that time that should be spent with family/friends was wasted on the diagnostic process, and 28% found the diagnosis expensive.
In conclusion, the survey clearly reveals that improvements to the diagnostic process are required to reduce patient stress, uncertainty, and cost. These improvements, in turn, should improve the quality of life and survival rate of the patients.
“The diagnostic delays and misdiagnoses that patients experience are particularly troubling given that we now have effective treatments for both fibrotic and inflammatory forms of ILD,” said David Lederer, MD, MS, PFF senior medical advisor on education and awareness, in a PFF release. “The results of the INTENSITY survey clearly signal the need for a change in primary care-provider education.”
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