{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T03:53:22Z","timestamp":1791604402543,"version":"4.3.4"},"reference-count":15,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T00:00:00Z","timestamp":1786406400000},"content-version":"vor","delay-in-days":10,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T00:00:00Z","timestamp":1785542400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["eJHaem"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Paroxysmal nocturnal hemoglobinuria (PNH) is a rare hematologic disorder characterized by complement\u2010mediated hemolysis, thrombosis, bone marrow failure, and anemia. Although current treatments improve outcomes, patients still experience hemolysis and could remain anemic with a negative impact on quality of life (QoL). The aim of this study was to assess whether patient\u2010reported outcomes (PROs) distinguish PNH patients with\/without hemolysis and evaluate factors associated with PROs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>In this international, multicenter, observational study, 97 PNH patients witfrom Italy and the UK completed the EORTC QLQ\u2010C30 and QLQ\u2010AA\/PNH measures at baseline and after 2 weeks. Clinical, biochemical, and treatment data were collected. Hemolysis was defined as LDH \u2265\u00a01.5\u00a0\u00d7\u00a0upper normal limit. PRO scores were compared between patients above and below this threshold. Associations of PROs with patient and disease factors were analyzed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Of 97 patients (mean age 49\u00a0\u00b1\u00a015), 24.7% were anemic (Hb\u00a0&lt;\u00a010\u00a0g\/dL) and 16% had hemolysis. QoL did not differ significantly by hemolysis status. However, anemia was associated with significantly lower EORTC QLQ\u2010C30 global health and functional scores (\n                      <jats:italic>p<\/jats:italic>\n                      \u00a0&lt;\u00a00.05), particularly in physical, role, and social domains, and with worse QLQ\u2010AA\/PNH emotional, cognitive, and physical functioning, as well as greater illness intrusiveness and stigmatization. Fatigue, dyspnea, and pain were common symptoms in anemic patients. QLQ\u2010AA\/PNH scores showed high internal consistency (Cronbach's\n                      <jats:italic>\u03b1<\/jats:italic>\n                      &gt;\u00a00.7) and test\u2010retest reliability (ICC: 0.72\u20130.95).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Anemia, but not residual hemolysis, was associated with impaired QoL across multiple domains. Addressing anemia alongside hemolysis may improve PROs in the management of PNH.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial Registration<\/jats:title>\n                    <jats:p>The authors have confirmed clinical trial registration is not needed for this submission<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/jha2.70376","type":"journal-article","created":{"date-parts":[[2026,8,11]],"date-time":"2026-08-11T15:45:25Z","timestamp":1786463125000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Anemia and Patient\u2010Reported Outcomes in Patients With Paroxysmal Nocturnal Hemoglobinuria: A Real\u2010World Observational Study"],"prefix":"10.1002","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9238-5734","authenticated-orcid":false,"given":"Esther Natalie","family":"Oliva","sequence":"first","affiliation":[{"name":"Hematology Department London North West University Healthcare NHS Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonio M","family":"Risitano","sequence":"additional","affiliation":[{"name":"Hematology and BMT Unit AORN San Giuseppe Moscati  Avellino Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eros Di","family":"Bona","sequence":"additional","affiliation":[{"name":"UOC Oncoematologia AULSS7 Pedemontana  Vicenza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessandro Maria","family":"Vannucchi","sequence":"additional","affiliation":[{"name":"SOD Ematologia Azienda Ospedaliera Universitaria Careggi di Firenze  Firenze Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilaria Maria","family":"Dellfino","sequence":"additional","affiliation":[{"name":"Hematology Unit Grande Ospedale Metropolitano Bianchi Melacrino Morelli  Reggio Calabria Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonio","family":"De Vivo","sequence":"additional","affiliation":[{"name":"Institute of Hematology  Bologna Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valentina","family":"Giai","sequence":"additional","affiliation":[{"name":"Hematology Department of Hematology and Oncology AOU Citt\u00e0 della Salute e della Scienza di Torino  Turin Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosario","family":"Notaro","sequence":"additional","affiliation":[{"name":"SOD Ematologia Azienda Ospedaliera Universitaria Careggi di Firenze  Firenze Italy"},{"name":"Istituto per lo Studio, la Prevenzione e la Rete Oncologica (ISPRO)  Florence Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giuseppe","family":"Iann\u00ec","sequence":"additional","affiliation":[{"name":"Associazione QOL\u2010ONE  Reggio Calabria Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eloise","family":"Beggiato","sequence":"additional","affiliation":[{"name":"Hematology AOU Citt\u00e0 della Salute e della Scienza di Torino\u2010Presidio Ospedaliero Molinette  Turin Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simona","family":"Sica","sequence":"additional","affiliation":[{"name":"Dipartimento di Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia Fondazione Policlinico Universitario A. Gemelli IRCCS Universit\u00e0 Cattolica Sacro Cuore  Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gaetano","family":"La Barba","sequence":"additional","affiliation":[{"name":"Department of Medicine and Aging Sciences University of Chieti\u2010Pescara  Pescara Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sneha","family":"Balakrishnan","sequence":"additional","affiliation":[{"name":"King's College Hospital NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanna","family":"Large","sequence":"additional","affiliation":[{"name":"King's College Hospital NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tanuja","family":"Thavarajah","sequence":"additional","affiliation":[{"name":"King's College Hospital NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simona","family":"Raso","sequence":"additional","affiliation":[{"name":"Department of Hematology and Rare Diseases Azienda Ospedaliera Ospedali Riuniti Villa Sofia\u2010Cervello  Palermo Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raffaele","family":"Fontana","sequence":"additional","affiliation":[{"name":"Hematology and Transplant Center University Hospital \u201cSan Giovanni di Dio e Ruggi d'Aragona\u201d  Salerno Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wilma","family":"Barcellini","sequence":"additional","affiliation":[{"name":"S.C. 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