Journey of Patients With Vasculitis From First Symptom to Diagnosis

NCT03410290 | Completed

• 1 other identifier: VCRC5538/V-PPRN4
• Study Type: observational
• Target: 456
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

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

Outcome Measures

Primary Outcomes (1)

• Percentages of patients with different types of vasculitis who report a delay in their disease diagnosis from initial symptoms of vasculitis to establishment of a diagnosis of vasculitis, stratified by disease type.

  Analysis of how people fill in the questionnaire to determine the time from onset of symptoms of vasculitis to the first encounter with a healthcare provider for evaluation of those symptoms.

  1 day

Study Arms (1)

Group 1

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

Other: Online Questionnaire

Interventions

Online Questionnaire OTHER

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

Group 1

Eligibility Criteria

• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

All individuals with self-reported vasculitis participating in the Vasculitis Patient-Powered Research Network (V-PPRN) will be invited to join the study, with a target recruitment period of 3 months. This study is open to US and international participants.

You may qualify if:

• 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.
• Language requirements: questionnaire will be in English only

You may not qualify if:

• Inability to provide informed consent and complete survey in English
• Patients with a diagnosis of "other" type of vasculitis
• Patients with a "missing" diagnosis -

Sponsors & Collaborators

• University of Pennsylvania: lead

Study Sites (1)

University of South Florida

Tampa, Florida, 33612, United States

Location

Related Links

• Vasculitis Patient-Powered Research Network

MeSH Terms

Conditions

Vasculitis; Systemic Vasculitis; Behcet Syndrome; Vasculitis, Central Nervous System; Cryoglobulinemia, Familial Mixed; Churg-Strauss Syndrome; Giant Cell Arteritis; Granulomatosis with Polyangiitis; IgA Vasculitis; Microscopic Polyangiitis; Polyarteritis Nodosa; Takayasu Arteritis

Condition Hierarchy (Ancestors)

Vascular Diseases; Cardiovascular Diseases; Mouth Diseases; Stomatognathic Diseases; Uveitis, Anterior; Panuveitis; Uveitis; Uveal Diseases; Eye Diseases; Hereditary Autoinflammatory Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Skin Diseases, Genetic; Skin Diseases; Skin and Connective Tissue Diseases; Skin Diseases, Vascular; Autoimmune Diseases of the Nervous System; Nervous System Diseases; Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Autoimmune Diseases; Immune System Diseases; Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis; Granuloma; Lymphoproliferative Disorders; Lymphatic Diseases; Hemic and Lymphatic Diseases; Arteritis; Lung Diseases, Interstitial; Lung Diseases; Respiratory Tract Diseases; Purpura; Blood Coagulation Disorders; Hematologic Diseases; Hemostatic Disorders; Hemorrhagic Disorders; Immune Complex Diseases; Hypersensitivity; Hemorrhage; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Skin Manifestations; Signs and Symptoms; Cerebral Small Vessel Diseases; Aortic Arch Syndromes; Aortic Diseases

Study Officials

• Antoine Sreih, MD

  University of Pennsylvania

  STUDY CHAIR

• Peter A Merkel, MD, MPH

  University of Pennsylvania

  STUDY DIRECTOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 1 Day
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Chief, Division of Rheumatology, Professor of Medicine and Epidemiology

Study Record Dates

• First Submitted: January 18, 2018
• First Posted: January 25, 2018
• Study Start: January 11, 2018
• Primary Completion: May 21, 2018
• Study Completion: May 21, 2018
• Last Updated: June 6, 2018

Record last verified: 2018-06

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)