PO:21:026 | Identifying patient profiles to personalize care and improve quality of life in italian EGPA patients
Francesca Torracca1, Roberto Padoan2, Giacomo Emmi3|4, Lara Bernardi5, Maria Rosaria Mollo5, Omar Shalby5, Fabio Tedone6, Davide Cafiero6, Eugenia Durante1 | 1APACS APS ETS - Associazione Pazienti Sindrome di Churg Strauss EGPA Arosio, Italy; 2Rheumatology Unit, Department of Medicine DIMED, University of Padua, Italy; 3Department of Medical, Surgical and Health Sciences, University of Trieste, Italy; 4Clinical Medicine Rheumatology Unit, Cattinara University Hospital, Trieste, Italy; 5GlaxoSmithKline Medical Department Verona, Italy; 6Helaglobe SRL Firenze, Italy
Abstract
Introduction. Eosinophilic granulomatosis with polyangiitis (EGPA) is a rare, chronic vasculitis that significantly impairs quality of life (QoL). Despite improved survival, patients often face persistent symptoms and complex care needs. Data on patient-reported QoL and perceived care quality remain limited, especially in Italy. We 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 guide personalized, multidisciplinary care strategies.
Methods. We conducted a cross-sectional, 77-item online survey among adult EGPA patients (self-reported physician diagnosis) between December 2024 and January 2025. The survey, developed in collaboration with APACS APS (Italian Churg-Strauss syndrome patient association), was distributed via SurveyMonkey. The questionnaire included validated tools: SF-36 for health-related QoL, PACIC (and PACIC-5As) for patient-perceived chronic care. Self-reported demographic, clinical, and disease impact data were also collected. Descriptive statistics and group comparisons were performed. Principal component analysis (PCA) of SF-36 and PACIC domains was followed by k-means clustering to identify patient subgroups.
Results. Seventy-two EGPA patients completed the survey (mean age 56 years; 65% female; median disease duration 7 years, 84.7% on biologics; 41.7% on glucocorticoids). SF-36 scores revealed moderate QoL impairment (mean Physical Component Summary 56.3±24.6 and Mental Component Summary 59.3±24.1). Quality of life was significantly lower among females, divorced/separated patients, and those with neurological involvement. Paresthesias had the greatest impact, affecting multiple SF-36 domains and daily functioning, including independence, work, and social life (all p<0.05). PACIC scores suggested moderate perceptions of care(mean PACIC domains: 2.8–3.5), with lowest ratings in “Goal Setting” and “Care Coordination”. PACIC-5As scores were low (mean 2.3), indicating suboptimal support for collaborative self-management. Cluster analysis identified three distinct patient groups: (1) a smaller cluster (n=12) with poor QoL yet high healthcare engagement (highest activation and relatively high PACIC); (2) the largest cluster (n=38) with the best QoL and highest care ratings (reflecting well-controlled disease and effective coordination); (3) a moderate-size cluster (n=22) with intermediate health status but the lowest PACIC scores (especially lacking assistance/follow-up), indicating a sense of inadequate support. Differences in key QoL and PACIC metrics were significant across clusters (p<0.001).
Conclusions. Italian EGPA patients experience impaired QoL and moderate care quality, with substantial heterogeneity in experiences and perceptions. A one-size-fits-all approach is inadequate, particularly for patients who feel under-supported despite moderate disease activity. These findings highlight the need for personalized care, improved follow-up, and integrated multidisciplinary strategies to enhance patients’ QoL.
Methods. We conducted a cross-sectional, 77-item online survey among adult EGPA patients (self-reported physician diagnosis) between December 2024 and January 2025. The survey, developed in collaboration with APACS APS (Italian Churg-Strauss syndrome patient association), was distributed via SurveyMonkey. The questionnaire included validated tools: SF-36 for health-related QoL, PACIC (and PACIC-5As) for patient-perceived chronic care. Self-reported demographic, clinical, and disease impact data were also collected. Descriptive statistics and group comparisons were performed. Principal component analysis (PCA) of SF-36 and PACIC domains was followed by k-means clustering to identify patient subgroups.
Results. Seventy-two EGPA patients completed the survey (mean age 56 years; 65% female; median disease duration 7 years, 84.7% on biologics; 41.7% on glucocorticoids). SF-36 scores revealed moderate QoL impairment (mean Physical Component Summary 56.3±24.6 and Mental Component Summary 59.3±24.1). Quality of life was significantly lower among females, divorced/separated patients, and those with neurological involvement. Paresthesias had the greatest impact, affecting multiple SF-36 domains and daily functioning, including independence, work, and social life (all p<0.05). PACIC scores suggested moderate perceptions of care(mean PACIC domains: 2.8–3.5), with lowest ratings in “Goal Setting” and “Care Coordination”. PACIC-5As scores were low (mean 2.3), indicating suboptimal support for collaborative self-management. Cluster analysis identified three distinct patient groups: (1) a smaller cluster (n=12) with poor QoL yet high healthcare engagement (highest activation and relatively high PACIC); (2) the largest cluster (n=38) with the best QoL and highest care ratings (reflecting well-controlled disease and effective coordination); (3) a moderate-size cluster (n=22) with intermediate health status but the lowest PACIC scores (especially lacking assistance/follow-up), indicating a sense of inadequate support. Differences in key QoL and PACIC metrics were significant across clusters (p<0.001).
Conclusions. Italian EGPA patients experience impaired QoL and moderate care quality, with substantial heterogeneity in experiences and perceptions. A one-size-fits-all approach is inadequate, particularly for patients who feel under-supported despite moderate disease activity. These findings highlight the need for personalized care, improved follow-up, and integrated multidisciplinary strategies to enhance patients’ QoL.
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