Patient‐reported outcome assessment in vasculitis may provide important data and a unique perspective

Objective To assess patients' self‐estimates of the burden of disease in vasculitis and to compare data across patient populations from the US, Germany, and the UK. Outcome assessment in vasculitis primarily focuses on physician evaluations of disease activity and damage. Little is known about...

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Bibliographic Details
Published in:Arthritis care & research (2010) 2010-11, Vol.62 (11), p.1639-1645
Main Authors: Herlyn, Karen, Hellmich, Bernhard, Seo, Philip, Merkel, Peter A.
Format: Article
Language:English
Subjects:
Adult
Aged
Female
Germany - epidemiology
Humans
Male
Middle Aged
Patient Participation - methods
Patient Participation - statistics & numerical data
Self Report - standards
Surveys and Questionnaires - standards
Treatment Outcome
United Kingdom - epidemiology
United States - epidemiology
Vasculitis - diagnosis
Vasculitis - epidemiology
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Summary:Objective To assess patients' self‐estimates of the burden of disease in vasculitis and to compare data across patient populations from the US, Germany, and the UK. Outcome assessment in vasculitis primarily focuses on physician evaluations of disease activity and damage. Little is known about the patients' perspectives regarding the burden of disease. Methods Patients ranked (scale 0–5) a list of vasculitis‐related items to estimate a combination of pain, interference with daily function, discomfort and/or annoyance, anxiety/psychological impact, and medical importance. Patients were also asked to list the 5 most troublesome aspects of the disease. Results Data from 264 patients with vasculitis from 3 countries were collected. Wegener's granulomatosis was the predominant disease, comprising 63% of the cohort. Diagnoses were confirmed by physicians in 98% of cases. The most common item from the free‐text sections was fatigue (75%), followed by pain (31%), musculoskeletal symptoms (24%), difficulty breathing (19%), financial aspects (13%), nasal discharge/crusting (14%), and weight gain (10%). Rankings of individual items varied substantially: fatigue (3.5), loss of energy (3.4), weight gain (3.1), joint pain (3.0), and sinusitis (3.0) were the highest‐ranked symptoms among those manifestations experienced by at least 50% of patients. Several severe manifestations (e.g., dialysis, seizures, oxygen dependency) were ranked lower (
ISSN:2151-464X
2151-4658
DOI:10.1002/acr.20276