Patient-reported outcomes in ANCA-associated vasculitis: a cross-sectional study to explore the interactions between patients’ and physicians’ perspectives

Abstract

To evaluate associations between the domains of the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) instrument and clinical variables. Patients with granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), eosinophilic granulomatosis with polyangiitis (EGPA), or renal-limited vasculitis (RLV) were recruited from a tertiary care center in Mexico City. Demographic, clinical, serological, and treatment-related data were retrieved. Disease activity, damage, patient and physician global assessments (PtGA and PhGA) were evaluated. All patients completed the AAV-PRO questionnaire, male patients also completed the International Index of Erectile Function (IIEF-5) questionnaire. Seventy patients (44 women and 26 men) were included, with a median age of 53.5 years (43–61), and a disease duration of 82 months (34–135). Moderate correlations were identified between the PtGA and the AAV-PRO domains: social and emotional impact, treatment side effects, organ-specific symptoms, and physical function. The PhGA correlated with the PtGA and prednisone doses. Subanalyses of the AAV-PRO domains according to sex, age, and disease duration showed significant differences in the treatment side effects domain, with higher scores in women, in patients < 50 years, and in patients with disease duration < 5 years. The domain of concerns about the future showed a higher score in patients with disease duration < 5 years. A total of 17/24 (70.8%) of men who completed the IIEF-5 questionnaire were classified as having some degree of erectile dysfunction. The domains of AAV-PRO correlated with other outcome measures, while differences were found between some of the domains according to sex, age, and disease duration. Supplementary Information The online version contains supplementary material available at 10.1007/s00296-023-05288-4.

Trends in health care of patients with vasculitides, including giant cell arteritis, Takayasu arteritis, ANCA-associated vasculitis and Behçet’s disease: cross-sectional data of the German National Database 2007–2021

“…A study by Rode et al confirms to this assumption showing a high association between physician-reported disease activity and increased CRP values as well as shorter disease duration in contrast to a high association between patient-reported disease activity and patient-reported limitations regarding pain, function and general well-being in patients with AAVs [ 23 ]. Hurtado-Arias et al found correlations between patient global assessment and social and emotional impact, physical function and concerns about the future in AAVs [ 36 ]. The annual comparisons of this study show very similar trends in the individual PRO dimensions at the same level as the patient-reported disease activity.…”

Validation of the Italian version of the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire

“…A recent review [ 15 ] highlighted that patients with vasculitis are most affected physically by fatigue, psychologically by anxiety, socially by reduced social participation and financially by functional decline and reduced employment. Furthermore, a recent Mexican study [ 16 ] reported that worries about the future scored highest on the Spanish-translated version of the AAV-PRO questionnaire. These findings also emerged in the AAV-PRO_ita questionnaire.…”

Systemic vasculitis: one year in review 2024

“…Studies have demonstrated the influence of factors such as sex, GC therapy, and disease history (e.g. disease duration, previous relapses) on patients' perception of their disease (118)(119)(120). Furthermore, since AAV is a multisystemic disorder, managing comorbidities, both pre-existing and subsequent to the diagnosis of AAV, is crucial (121).…”