Skip to content

New score for EGPA - Patient Version

Survey for Patients

This survey is part of an international project aiming to develop a tool to measure disease activity in EGPA.
In this project, we are asking both clinicians and patients to share their perspectives. You are completing the section designed for people living with EGPA.
The goal of this survey is to understand which symptoms, test results, and other aspects of the disease are most important when evaluating how active EGPA is.
The results will help identify which aspects of the disease should be included in a future disease activity score for EGPA. In this survey, “disease activity” means symptoms or signs of EGPA that are currently present and may improve with treatment.
Please rate each item on a scale from 0 (not important at all) to 9 (extremely important), based on how important you think it is to include it when assessing disease activity.
There are no right or wrong answers. Please answer based on your personal experience.
Thank you for taking the time to complete this survey. Your experience and perspective are extremely valuable and will help improve how EGPA is understood and assessed .
In which country do you currently live?
What is your highest level of education completed?
What is your sex?
What is your age?
How long have you been diagnosed with EGPA?
Please rate each item on a Likert scale from 0 (lowest importance) to 9 (highest importance) according to its importance for inclusion in the disease activity construct.
Q1. In your own words, what does it mean to you when your EGPA is active?
Q2. What matters most to you when your disease becomes active?
Q3. Below is a list of symptoms or changes that may happen when EGPA is active. Please rate how important each one is in helping you understand that your disease is active
0
1
2
3
4
5
6
7
8
9
Fever
Weight loss
Fatigue
Arthritis/arthralgia
Neuropathic pain
Nasal obstruction
Anosmia (i.e. loss of smell)
Epistaxis (i.e. nosebleed)
Hearing loss
Asthma worsening
New pulmonary infiltrates (i.e., evidence of abnormal substances or fluids in the lungs at imaging scan)
Alveolar hemorrhage (i.e., bleeding occurring deep inside the lungs)
Peripheral neuropathy (i.e, damage of nerves outside the brain, generally causing tingling, numbness, burning pain, or muscle weakness, usually in the hands and feet)
Chest pain
Shortness of breath on effort
Palpitations
Myocarditis (i.e., inflammation of the heart muscle)
Pericarditis (i.e., inflammation or swelling membrane surrounding the heart)
Heart failure (i.e., a condition where the heart muscle is too weak or stiff to pump blood efficiently)
Purpura (i.e., purple, red, or brown spots and patches on the skin)
Nodules (i.e., a firm, raised, or rounded bump located on or underneath the surface of the skin)
Hematuria (i.e., presence of blood in urine)
Proteinuria (i.e., presence of proteins in urine)
Diarrhea
Abdominal pain
Need to increase glucocorticoid dosage
Increase in inflammatory biomarkers at blood tests (i.e., worsening blood tests)
Worsening in your health-related quality of life (for example, reduced physical activity, poor sleep quality, difficulty concentrating, irritability, etc.)
What other features of EGPA do you think are important to measure but are not listed above