{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T12:47:47Z","timestamp":1792154867593,"version":"4.4.0"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T00:00:00Z","timestamp":1784505600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T00:00:00Z","timestamp":1792108800000},"content-version":"vor","delay-in-days":88,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"GSK, Italy"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Patient Rep Outcomes"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methodology<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      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\u2009\u00b1\u200924.6; MCS 59.3\u2009\u00b1\u200924.1), 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 (\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u20090.05). PACIC scores reflected moderate perceptions of care (2.8\u20133.5), with lowest scores in \u201cGoal Setting\u201d and \u201cCare Coordination.\u201d 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                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200912); (2) best QoL and care ratings (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200938); (3) intermediate health status but lowest PACIC scores (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200922), reflecting perceived lack of support. Differences across clusters were statistically significant (\n                      <jats:italic>p<\/jats:italic>\n                      \u2009&lt;\u20090.001).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s41687-026-01149-3","type":"journal-article","created":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T14:26:18Z","timestamp":1784557578000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Identifying patient profiles to personalize care and improve quality of life in EGPA patients: a national cross-sectional survey"],"prefix":"10.1186","volume":"10","author":[{"given":"Francesca Romana","family":"Torracca","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roberto","family":"Padoan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giacomo","family":"Emmi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lara","family":"Bernardi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Rosaria","family":"Mollo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Omar","family":"Shalby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fabio","family":"Tedone","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Davide","family":"Cafiero","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eugenia","family":"Durante","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,7,20]]},"reference":[{"key":"1149_CR1","doi-asserted-by":"publisher","first-page":"1707","DOI":"10.1093\/rheumatology\/kez148","volume":"58","author":"A Mahr","year":"2019","unstructured":"Mahr A, Specks U, Jayne D (2019) Subclassifying ANCA-associated vasculitis: a unifying view of disease spectrum. 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Institutional Review Board (IRB) and Research Ethics Committee (REC) approvals were not required nor sought because the research did not meet the requirements for needing ethical approval, per Sect.\u00a0 1.3 of the EphMRA guidelines and as per Health Research Authority (HRA) decision tool.","order":1,"name":"Ethics","label":"Ethics approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"FT, ED: No Conflict of interests. GE: Received fees and honoraria for consulting and lectures from GSK, AstraZeneca, CSL Vifor, SOBI, Novartis. RP: Received fees and honoraria for consulting and lectures from GSK, AstraZeneca, CSL Vifor, Sanofi LB, MRM, OS are GSK employees and hold stocks.","order":2,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"193"}}