Diagnostic Delays in Interstitial Lung Diseases (ILDs)

Wijsenbeek, Marlies; Deparis, N.; Valenzuela, Carlos Tejada; Orsatti, Leticia; Mounir, Baher; Danoff, S.K.

doi:10.1164/ajrccm-conference.2019.199.1_meetingabstracts.a4328

Cited by 1 publication

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“…This lack of knowledge and awareness underlies many of the delay-associated characteristics of the diagnostic trajectories identified in this study. Similar findings of patients often being unaware of the potential relationship between respiratory symptoms and ARD have previously been reported [ 28 ]. This study also reported that patient symptoms, lung function and quality of life worsened, adding to patients’ experience of increased anxiety and distress.…”

Section: Discussionsupporting

confidence: 85%

“…For many patients, it took more than 12 months from their first respiratory symptom to a final diagnosis of ARD-ILD. Similarly, patients with various underlying rheumatic diseases interviewed in a multinational qualitative study reported a median diagnostic delay of 11 months [ 28 ]. We found two types of delay described by patients: 1) the accumulated delay across the diagnostic trajectories caused by inappropriate referrals to non-relevant specialists and accumulated waiting time from referral to specific tests or examinations e.g.…”

Section: Discussionmentioning

confidence: 99%

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The diagnostic trajectories of Danish patients with autoimmune rheumatologic disease associated interstitial lung disease: an interview-based study

Johansen

Bendstrup

Davidsen

et al. 2023

European Clinical Respiratory Journal

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Background Autoimmune rheumatologic disease associated interstitial lung diseases (ARD-ILD) are rare conditions and the association between ARDs and respiratory symptoms often goes unrecognised by ARD patients and general practitioners (GPs). The diagnostic trajectory from the first respiratory symptoms to an ARD-ILD diagnosis is often delayed and may increase the burden of symptoms and allow further disease progression.The aim of this study was to 1) characterise the diagnostic trajectories of ARD-ILD patients and to 2) identify barriers for obtaining a timely ILD diagnosis based on the experiences and perceptions of both patients and healthcare professionals. Method Semi-structured qualitative interviews were conducted with Danish ARD-ILD patients, rheumatologists, pulmonologists and ILD nurses. Results Sixteen patients, six rheumatologists, three ILD nurses and three pulmonologists participated. Five characteristics of diagnostic trajectories were identified in the patient interviews: 1) early referral to lung specialists; 2) early delay; 3) delay or shortcut depending on specific circumstances; 4) parallel diagnostic trajectories connected late in the process; 5) early identification of lung involvement without proper interpretation. With the exception of early referral to lung specialists, all of the diagnostic trajectory characteristics identified led to delayed diagnosis. Delayed diagnostic trajectories resulted in patients experiencing increased uncertainty. Inconsistent disease terminology, insufficient knowledge and lack of awareness of ARD-ILD among central healthcare professionals and delayed referral to ILD specialists were main contributors to the diagnostic delay identified by the informants. Conclusion Five characteristics of the diagnostic trajectories were identified, four of which led to diagnostic delay of ARD-ILD. Improved diagnostic trajectories can shorten the diagnostic trajectory and increase early access to appropriate specialist medical care. Improved awareness and expertise in ARD-ILD across different medical specialties, especially among GPs, may contribute to more efficient and timely diagnostic trajectories and improved patient experiences.

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Section: Discussionsupporting

confidence: 85%

Section: Discussionmentioning

confidence: 99%