Diagnostic delays in vasculitis and factors associated with time to diagnosis
Abstract Background Patients 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...
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| Format: | Article |
| Language: | English |
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BMC
2021-04-01
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| Series: | Orphanet Journal of Rare Diseases |
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| Online Access: | https://doi.org/10.1186/s13023-021-01794-5 |
| _version_ | 1818941867851513856 |
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| author | Antoine G. Sreih Keri Cronin Dianne G. Shaw Kalen Young Cristina Burroughs Joyce Kullman Kirthi Machireddy Carol A. McAlear Peter A. Merkel for the Vasculitis Patient-Powered Research Network |
| author_facet | Antoine G. Sreih Keri Cronin Dianne G. Shaw Kalen Young Cristina Burroughs Joyce Kullman Kirthi Machireddy Carol A. McAlear Peter A. Merkel for the Vasculitis Patient-Powered Research Network |
| author_sort | Antoine G. Sreih |
| collection | DOAJ |
| description | Abstract Background Patients 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. Methods Patients 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. Results 375 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. Conclusion Patients 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. |
| first_indexed | 2024-12-20T07:02:22Z |
| format | Article |
| id | doaj.art-00ccab25353a4cfc92deb61775d20863 |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-12-20T07:02:22Z |
| publishDate | 2021-04-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-00ccab25353a4cfc92deb61775d208632022-12-21T19:49:10ZengBMCOrphanet Journal of Rare Diseases1750-11722021-04-011611810.1186/s13023-021-01794-5Diagnostic delays in vasculitis and factors associated with time to diagnosisAntoine G. Sreih0Keri Cronin1Dianne G. Shaw2Kalen Young3Cristina Burroughs4Joyce Kullman5Kirthi Machireddy6Carol A. McAlear7Peter A. Merkel8for the Vasculitis Patient-Powered Research Network9Division of Rheumatology, University of PennsylvaniaDivision of Rheumatology, University of PennsylvaniaThe Vasculitis FoundationThe Vasculitis FoundationDepartment of Biostatistics, University of South FloridaThe Vasculitis FoundationDivision of Rheumatology, University of PennsylvaniaDivision of Rheumatology, University of PennsylvaniaDivision of Rheumatology, University of PennsylvaniaVasculitis Patient-Powered Research NetworkAbstract Background Patients 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. Methods Patients 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. Results 375 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. Conclusion Patients 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.https://doi.org/10.1186/s13023-021-01794-5VasculitisDiagnosisPatient-reported data |
| spellingShingle | Antoine G. Sreih Keri Cronin Dianne G. Shaw Kalen Young Cristina Burroughs Joyce Kullman Kirthi Machireddy Carol A. McAlear Peter A. Merkel for the Vasculitis Patient-Powered Research Network Diagnostic delays in vasculitis and factors associated with time to diagnosis Orphanet Journal of Rare Diseases Vasculitis Diagnosis Patient-reported data |
| title | Diagnostic delays in vasculitis and factors associated with time to diagnosis |
| title_full | Diagnostic delays in vasculitis and factors associated with time to diagnosis |
| title_fullStr | Diagnostic delays in vasculitis and factors associated with time to diagnosis |
| title_full_unstemmed | Diagnostic delays in vasculitis and factors associated with time to diagnosis |
| title_short | Diagnostic delays in vasculitis and factors associated with time to diagnosis |
| title_sort | diagnostic delays in vasculitis and factors associated with time to diagnosis |
| topic | Vasculitis Diagnosis Patient-reported data |
| url | https://doi.org/10.1186/s13023-021-01794-5 |
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