Improving outcome assessment in pediatric vasculitis
نویسنده
چکیده
Background A name game For non-native English speakers it is often difficult to correctly translate ‘disease outcome’ to their own languages. Among frequently used substitutions, terms such as ‘disease course’, ‘prognosis’ or ‘response to treatment’ are used in the context of a description of disease outcome, although their meaning only partly captures that of an ‘outcome’. This linguistic difficulty reflects what health professionals, regardless their country of origin, know by heart: disease outcome is an extremely complex entity where objective, both quantifiable and qualitative features combine with subjective perception and interpretation. To add to the complexity, all of those measures can be evaluated by health professionals as well as patients and/or caregivers.
منابع مشابه
Time to focus on outcome assessment tools for childhood vasculitis
Childhood systemic vasculitides are a group of rare diseases with multi-organ involvement and potentially devastating consequences. After establishment of new classification criteria (Ankara consensus conference in 2008), it is now time to establish measures for proper definition of activity and damage in childhood primary vasculitis. By comparison to adult vasculitis, there is no consensus for...
متن کامل[vasculitides in Childhood].
Primary systemic vasculitides in children are relatively rare diseases. In most cases, they have an unknown etiology and are defined as the presence of inflammation in the blood vessel wall. Establishing the diagnosis of vasculitis is oft en challenging, since the disorder is multisystem in nature with mostly nonspecific symptoms. The last 10 years have seen significant advances in the field of...
متن کاملVasculitis
Primary systemic vasculitides (PSV) in children belong to the most challenging conditions in paediatric rheumatology practice. The spectrum of vasculitis affecting children as well as their clinical presentations differ from that of adults. Apart from relatively common Henoch-Shönlein purpura and Kawasaki disease, chronic PSV are extremely rare in childhood. They include mainly childhood polyar...
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BACKGROUND Because pediatric antineutrophil cytoplasmic antibody-associated vasculitis is rare, management generally relies on adult data. We assessed treatment practices, uptake of existing clinical assessment tools, and interest in pediatric treatment protocols among rheumatologists caring for children with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA). METHODS A...
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The systemic vasculitides are a group of rare, chronic, relapsing, but often progressive inflammatory conditions. They are associated with a significant burden of morbidity both due to scarring from the disease itself and as a consequence of treatment with glucocorticoids and other potent immunosuppressive agents. Careful assessment of disease activity is critical to guide appropriate use of th...
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