{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T16:40:11Z","timestamp":1780504811462,"version":"3.54.1"},"reference-count":39,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T00:00:00Z","timestamp":1773360000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T00:00:00Z","timestamp":1773360000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100007363","name":"Fondazione Citt\u00e0 della Speranza","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007363","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp;amp; Cancer"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy affecting millions of individuals worldwide. The clinical expression and psychosocial burden of SCD vary widely across geographical, cultural, and healthcare system contexts, underscoring the need for setting\u2010specific approaches to assessment. Understanding how patients perceive the impact of SCD on their health, daily functioning, and treatment experiences within their own context is essential to identifying unmet needs, addressing barriers to care, challenging misconceptions, and improving health\u2010related quality of life (HRQoL).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This cross\u2010sectional study assessed HRQoL in children, adolescents, and young adults (AYAs) with SCD in Italy, and evaluated the impact of sociodemographic, clinical, and hematological variables, exploring discrepancies between patient and caregiver perceptions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Fifty\u2010three patients aged 6\u201326\u00a0years and 62 caregivers of patients were enrolled. Half of patients showed moderate HRQoL compromise in at least three domains (pain interference and intensity, fatigue), with two\u2010thirds experiencing recent pain. AYAs demonstrated significantly worse outcomes than children in pain interference (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.0001), pain intensity (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.0039), depression (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.0273), and fatigue (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.0298). Caregiver\u2013patient agreement was consistently low, particularly among adolescents. Young adults reported inadequate emotional support despite moderate instrumental support, with all expressing a need for psychological assistance.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This first assessment of HRQoL in Italian youths with SCD identifies adolescence as a critical vulnerability period with worsening outcomes and unrecognized emotional needs. Significant patient\u2013caregiver perception discrepancies highlight unmet needs. Findings underscore the need to integrate HRQoL measures into routine care and develop targeted interventions for adolescents, including enhanced psychological support and structured transition programs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/1545-5017.70179","type":"journal-article","created":{"date-parts":[[2026,3,13]],"date-time":"2026-03-13T11:04:27Z","timestamp":1773399867000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Unheard and Under\u2010Supported: Health\u2010Related Quality of Life in Children, Adolescents, and Young Adults With Sickle Cell Disease"],"prefix":"10.1002","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-2740-009X","authenticated-orcid":false,"given":"Desir\u00e9","family":"Fantasia","sequence":"first","affiliation":[{"name":"Department of Woman's and Child's Health University of Padova  Padua Italy"},{"name":"Veneto Region Reference Center for the Diagnosis, Management and Treatment of Sickle Cell Disease in Childhood, Pediatric Hematology\u2013Oncology Unit Azienda\u2010Ospedale Universit\u00e0 di Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giulia","family":"Reggiani","sequence":"additional","affiliation":[{"name":"Department of Woman's and Child's Health University of Padova  Padua Italy"},{"name":"Veneto Region Reference Center for the Diagnosis, Management and Treatment of Sickle Cell Disease in Childhood, Pediatric Hematology\u2013Oncology Unit Azienda\u2010Ospedale Universit\u00e0 di Padova  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth J.","family":"Maran","sequence":"additional","affiliation":[{"name":"Department of Woman's and Child's Health University of Padova  Padua Italy"},{"name":"Fondazione Citt\u00e0 della Speranza Onlus  Vicenza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria Elisa Delle","family":"Fave","sequence":"additional","affiliation":[{"name":"Veneto Region Reference Center for the Diagnosis, Management and Treatment of Sickle Cell Disease in Childhood, Pediatric Hematology\u2013Oncology Unit Azienda\u2010Ospedale Universit\u00e0 di Padova  Padua Italy"},{"name":"Fondazione Citt\u00e0 della Speranza Onlus  Vicenza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilaria","family":"Baido","sequence":"additional","affiliation":[{"name":"Department of Woman's and Child's Health University of Padova  Padua Italy"},{"name":"Fondazione Citt\u00e0 della Speranza Onlus  Vicenza Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna Chiara","family":"Frigo","sequence":"additional","affiliation":[{"name":"Dipartimento di Scienze Cardio\u2010Toraco\u2010Vascolari e Sanit\u00e0 Pubblica  Padua Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria 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