Journey of Patients With Vasculitis From First Symptom to Diagnosis

University of Pennsylvania

Status: Completed

Conditions: Giant Cell Arteritis; Henoch Schonlein Purpura; Cryoglobulinemic Vasculitis; Urticarial Vasculitis; Takayasu Arteritis; Eosinophilic Granulomatous Vasculitis; Wegener Granulomatosis; Granulomatosis With Polyangiitis; Systemic Vasculitis; Polyarteritis Nodosa; Temporal Arteritis; CNS Vasculitis; Vasculitis; Microscopic Polyangiitis; Behcet's Disease; IgA Vasculitis

Treatments: Other: Online Questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT03410290

VCRC5538/V-PPRN4

Details and patient eligibility

About

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.

Enrollment: 456 patients

Sex: All

Volunteers: No Healthy Volunteers

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 -

Trial design

456 participants in 1 patient group

Group 1

Description:

The online questionnaire includes questions about factors that impacted a patients diagnosis of vasculitis.

Treatment:

Other: Online Questionnaire