Journey of Patients With Vasculitis From First Symptom to Diagnosis
| Status: | Completed |
|---|---|
| Conditions: | Cardiology, Cardiology, Cardiology, Cardiology, Cardiology, Hematology, Hematology |
| Therapuetic Areas: | Cardiology / Vascular Diseases, Hematology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 6/8/2018 |
| Start Date: | January 11, 2018 |
| End Date: | May 21, 2018 |
The Journey of Patients With Vasculitis From First Symptom to Diagnosis
This study seeks to understand the journey that patients eventually are diagnosed with
vasculitis experience in the period prior to their formal diagnosis by a healthcare provider.
Data elements of interest include average time from the onset of the first symptoms to the
time a diagnosis of vasculitis is confirmed. Other aims include identifying factors
associated with the time to diagnosis. These factors will be divided into: a) intrinsic
factors, or so-called "patient-related factors", such as the type of vasculitis symptoms,
patient demographics, socioeconomic status, patients' beliefs regarding the etiology of their
symptoms, and other factors, and b) extrinsic factors, or "professional/health system
factors", such as healthcare access, referral patterns, testing patterns, and other factors.
Understanding such factors can guide future efforts to shorten delays in diagnosis and
thereby improve outcomes. All analyses will be done for the population of patients with
vasculitis as a whole and by individual types of vasculitis.
vasculitis experience in the period prior to their formal diagnosis by a healthcare provider.
Data elements of interest include average time from the onset of the first symptoms to the
time a diagnosis of vasculitis is confirmed. Other aims include identifying factors
associated with the time to diagnosis. These factors will be divided into: a) intrinsic
factors, or so-called "patient-related factors", such as the type of vasculitis symptoms,
patient demographics, socioeconomic status, patients' beliefs regarding the etiology of their
symptoms, and other factors, and b) extrinsic factors, or "professional/health system
factors", such as healthcare access, referral patterns, testing patterns, and other factors.
Understanding such factors can guide future efforts to shorten delays in diagnosis and
thereby improve outcomes. All analyses will be done for the population of patients with
vasculitis as a whole and by individual types of vasculitis.
Inclusion Criteria:
1. Diagnosis of a systemic vasculitis: The V-PPRN includes patients with self-reported
Behçet's disease, central nervous system vasculitis, cryoglobulinemic vasculitis,
eosinophilic granulomatosis with polyangiitis (Churg-Strauss Syndrome, CSS), giant
cell (temporal) arteritis (GCA), granulomatosis with polyangiitis (Wegener's, GPA),
IgA vasculitis (Henoch-Schönlein Purpura), microscopic polyangiitis (MPA),
polyarteritis nodosa (PAN), Takayasu's arteritis (TAK), and urticarial vasculitis.
2. Language requirements: questionnaire will be in English only
Exclusion Criteria:
1. Inability to provide informed consent and complete survey in English
2. Patients with a diagnosis of "other" type of vasculitis
3. Patients with a "missing" diagnosis -
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