ArticleOrphanet journal of rare diseases2021
Diagnostic delays in vasculitis and factors associated with time to diagnosis.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers.
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Who cites it
41 citing papers in PubMed.
- Time to diagnosis in large vessel vasculitis: insights from a retrospective study at a tertiary rheumatology centre.RMD open · 2026Article
- The diagnostic pathway and time to diagnosis in ANCA-associated vasculitis: a retrospective study at a tertiary rheumatology center.Clinical rheumatology · 2026Article
- Red flags in asymmetric axonal neuropathy revealing MPO-ANCA-associated microscopic polyangiitis: a case report.BMC neurology · 2026Article
- A weakly supervised transformer for rare disease diagnosis and subphenotyping from EHRs with pulmonary case studies.NPJ digital medicine · 2026Article
- Beyond clinical criteria: emerging biomarkers and advanced imaging in the diagnosis, monitoring and treatment of vasculitides.Frontiers in medicine · 2026Review
- A multispecialty consensus-based red flag checklist for the early recognition of ANCA-associated vasculitis.Frontiers in immunology · 2026Article
- ANCA testing strategies: A single centre experience over the past decade in a large teaching hospital in the Netherlands.PloS one · 2026Article
- The 2024 Vasculitis Foundation Quality Care Summit: Seeking Strategies to Improve Care for All Patients.Arthritis & rheumatology (Hoboken, N.J.) · 2025Article
- Challenges in the diagnosis, classification and prognosis of ANCA-associated vasculitis.Nature reviews. Rheumatology · 2025Review
- Living with Eosinophilic Granulomatosis with Polyangiitis (EGPA): Podcast of a Patient-Physician Discussion.Advances in therapy · 2025Article
- Microscopic polyangiitis complicated with pulmonary hepatitis B virus infection: A case report and literature review.Infectious medicine · 2025Article
- Small Vessel Vasculitis Mimicking Inflammatory Bowel Disease.ACG case reports journal · 2025Article
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- Cardiac disease in patients with vasculitis.Clinical research in cardiology : official journal of the German Cardiac Society · 2025Article
- An Unveiling of the Misdiagnosis of Granulomatosis with Polyangiitis as Acute Sinusitis: A Case Report.Diagnostics (Basel, Switzerland) · 2025Article
- Muscle Vasculitis: A Novel Delineation of Distinct Subsets of Disease.ACR open rheumatology · 2025Article
- Patients Diagnosed with Granulomatosis with Polyangiitis: The Journey to Receive Rheumatologist Care.Journal of clinical medicine · 2025Article
- The cost of the diagnostic odyssey of patients with suspected rare diseases.Orphanet journal of rare diseases · 2025Article
- Age-Related Variations in the Clinical Presentation and Treatment Outcomes of New-Onset GPA: A Longitudinal Study.Journal of clinical medicine · 2025Article
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Authors and funding
10 authors.
Funding
Abstract
backgroundPatients with vasculitis, a set of rare diseases, encounter delays in obtaining an accurate diagnosis which can lead to substantial morbidity and increased mortality. This study sought to describe the diagnostic journey of patients with vasculitis and identify factors associated with time to diagnosis.
methodsPatients with vasculitis enrolled in an online registry completed a two-stage study: Stage 1: survey of open-ended questions about patients' diagnostic journeys and perceived factors associated with rapid or delayed diagnosis; Stage 2: survey with specific questions based on data from Stage 1 and additional investigator-identified factors.
results375 patients with vasculitis participated in Stage 1; 456 patients participated in Stage 2. 85% of patients were seen by a healthcare provider within 3 months of the onset of symptoms. The median time to diagnosis of vasculitis was 7 months. 313/456 (73%) of patients were misdiagnosed initially. 40% of diagnoses were made in a hospital setting; 2% of diagnoses were made at a specialized vasculitis center. 60% of patients had at least 1 visit to an emergency room prior to diagnosis. Unemployment, time to travel to a medical center > 1 h, initial misdiagnosis, and delays in seeing a specialist were all associated with longer times to diagnosis. 373/456 (82%) of patients reported that a delayed diagnosis had negative consequences on their health.
conclusionPatients with vasculitis encounter substantial delays in achieving an accurate diagnosis and these delays are associated with negative health consequences. Both patient-related factors and healthcare-related factors are associated with diagnostic delays.
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