The interstitial lung disease (ILD) patient journey in Brazil

Abstract

Due to a complex and multidisciplinary approach to reach the accurate diagnosis, ILD patients struggle consulting different physicians, receive incorrect diagnosis, and consequently unappropriated treatment worldwide.^1,2 Some patients may have symptoms for more than 5 years before diagnosis in the UK.² In Brazil, there is still lack of data showing the patient's journey, although a public consultation performed in April 2022 on SSc-ILD treatment protocol indicates Brazilian patients face similar problems seen globally.³

Methods: A quantitative survey was performed by computer-assisted telephone interviewing (CATI), conducted over 6 weeks, with 90 Brazilian ILD patients by the DataFolha research institute starting in April 2021 (PM745174). The questions aimed to understand the trajectory from disease suspicion to diagnosis and treatment.

Results: About 1 in 3 patients had consulted 5 or more physicians until diagnosis. In average, patients took 3 years to receive the correct diagnosis of IPF or SSc-ILD. For PF-ILD, the mean time was 4 years. 62% of patients showed worsening up to two years after the first symptoms, 36% in less than one year. For patients, the major temporal barriers were the time between requesting additional tests until confirming the diagnosis (26%) and time between requesting treatment and starting medication (36%). The major risk factors detected were passive smoking (42%), constant mold exposure (36%) and occupational exposure to inhaled substances as silica or asbestos (22%).

Conclusion: It is important to recognize the barriers that interfere with early ILD diagnosis as well as strategies to overcome them to benefit the patient, improve patient's outcomes, quality of life and increase survival.