J Patient Rep Outcomes. 2026 Jul 20. doi: 10.1186/s41687-026-01149-3. Online ahead of print.
ABSTRACT
BACKGROUND: Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare, chronic disease that significantly affects quality of life (QoL). Despite improved survival, many patients experience persistent symptoms and complex care needs. Patient-reported data on QoL and perceived care quality remain limited, particularly in Italy. This study aimed to assess health-related QoL and patient-perceived care quality among Italian EGPA patients and to identify distinct patient profiles through cluster analysis to inform personalized, multidisciplinary care strategies.
METHODOLOGY: We conducted a cross-sectional, 77-item online survey among adult EGPA patients (self-reported diagnosis) between December 2024 and January 2025. The survey, developed with APACS APS (Associazione Pazienti con Sindrome di Churg-Strauss), was distributed via the SurveyMonkey platform. It included validated instruments: SF-36 for health-related QoL and PACIC (with PACIC-5As) for perceptions of chronic care. Additional demographic, clinical, and disease impact data were collected. Descriptive statistics and group comparisons were performed. SF-36 and PACIC domains were analyzed using principal component analysis (PCA), followed by k-means clustering to identify patient subgroups.
RESULTS: Seventy-two patients completed the survey (mean age 56; 65% female; median disease duration 7 years; 84.7% on biologics; 41.7% on glucocorticoids). SF-36 scores showed moderate QoL impairment (mean PCS 56.3 ± 24.6; MCS 59.3 ± 24.1), with lower QoL among females, divorced/separated individuals, and those with neurological involvement. Paresthesia had the greatest impact, affecting multiple QoL domains and daily functioning (p < 0.05). PACIC scores reflected moderate perceptions of care (2.8-3.5), with lowest scores in “Goal Setting” and “Care Coordination.” PACIC-5As scores were low (mean 2.3), indicating suboptimal collaborative care. Cluster analysis identified three profiles: (1) poor QoL with high healthcare engagement (n = 12); (2) best QoL and care ratings (n = 38); (3) intermediate health status but lowest PACIC scores (n = 22), reflecting perceived lack of support. Differences across clusters were statistically significant (p < 0.001).
CONCLUSIONS: Italian EGPA patients report impaired QoL and only moderate care quality, with notable heterogeneity in experiences. Personalized, multidisciplinary approaches are needed, especially for patients who feel under-supported despite moderate disease activity.
PMID:42474947 | DOI:10.1186/s41687-026-01149-3
