{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T08:59:38Z","timestamp":1785488378706,"version":"3.56.0"},"reference-count":21,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T00:00:00Z","timestamp":1785456000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T00:00:00Z","timestamp":1785456000000},"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":["Haemophilia"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>To examine the association between patient\u2010reported outcome measures (PROMs) and objective measures of clinical performance in children, adolescents, and adults with haemophilia, highlighting their implications for person\u2010centered care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Advances in haemophilia treatment have reduced bleeding rates, increasing the relevance of patient\u2010reported outcome measures (PROMs) to capture the real impact of the disease on a person's life. However, the integration of PROMs into clinical practice remains limited, despite the growing emphasis on person\u2010centered, participatory, and preference\u2010sensitive care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Observational, cross\u2010sectional, and analytical. 111 participants with haemophilia A (33 aged 8\u201317 years; 78 aged 18 years or older) were assessed at a Brazilian comprehensive haemophilia care centre. Patient\u2010reported outcome assessment instruments (PROMs) included EQ\u20105D, VAS, PEDHAL, or HAL, depending on age. Clinical performance was assessed using the HJHS and FISH. Spearman correlations were applied.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The PROMs showed moderate to strong correlations, clinically consistent with joint health and functional independence in both age groups. In children\/adolescents, the PEDHAL showed a strong correlation with the HJHS. In adults, the HAL and EQ\u20105D\u20103L demonstrated the highest agreement with the HJHS and FISH. These findings indicate high convergent validity and reinforce patients' subjective perception as an accurate reflection of their functional status.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The systematic use of these instruments can contribute to longitudinal monitoring, personalization of therapeutic strategies, and improvement in the quality of care, especially in adult populations that present a higher disease burden and a poorer perception of quality of life over time.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70363","type":"journal-article","created":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T08:27:53Z","timestamp":1785486473000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient\u2010Reported Outcome Measures and Clinical Performance in Hemophilia: Implications for Person\u2010Centered Care"],"prefix":"10.1111","author":[{"given":"Tatyane Oliveira Rebou\u00e7as","family":"Brito","sequence":"first","affiliation":[{"name":"Doctor of Clinical Assistance from the State University of Cear\u00e1 and nurse at the Hematology and Hemotherapy Center of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luiz Ivando Pires Ferreira","family":"Filho","sequence":"additional","affiliation":[{"name":"Hematologist at the Hematology and Hemotherapy Center of Piau\u00ed and Professor at the Federal University of Piau\u00ed  Teresina Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luany Elvira Mesquita","family":"Carvalho","sequence":"additional","affiliation":[{"name":"Hematologist at the Hematology and Hemotherapy Center of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francisco Josimar","family":"Gir\u00e3o J\u00fanior","sequence":"additional","affiliation":[{"name":"Federal University of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pedro Everson Alexandre","family":"de Aquino","sequence":"additional","affiliation":[{"name":"Biomedical scientist at the Hematology and Hemotherapy Center of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chiara Bezerra","family":"Barreira","sequence":"additional","affiliation":[{"name":"Physiotherapist at the Hematology and Hemotherapy Center of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucilane Maria Sales","family":"da Silva","sequence":"additional","affiliation":[{"name":"Professor in the Postgraduate Program in Clinical Assistance at the State University of Cear\u00e1  Fortaleza Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,31]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572\u2010021\u201000278\u2010x"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(15)01123\u2010X"},{"key":"e_1_2_11_4_1","volume-title":"Perfil das coagulopatias heredit\u00e1rias no Brasil: 2023","author":"Sa\u00fade M.","year":"2023"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15084"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14099"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14990"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.0040296"},{"key":"e_1_2_11_10_1","unstructured":"Python Software Foundation.Python Language Reference version 3.11.https:\/\/www.python.org."},{"key":"e_1_2_11_11_1","volume-title":"Practical Statistics for Medical Research","author":"Douglas G.","year":"1991"},{"issue":"3","key":"e_1_2_11_12_1","first-page":"591","article-title":"An Analysis of Variance Test for Normality (complete samples)","volume":"52","author":"Samuel Sanford Shapiro S. 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