{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T18:40:17Z","timestamp":1788460817125,"version":"build-2803163510"},"reference-count":28,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2022,6,20]],"date-time":"2022-06-20T00:00:00Z","timestamp":1655683200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100008272","name":"Novartis Pharmaceuticals Corporation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J Hematol"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The international Sickle Cell World Assessment Survey (SWAY) reported a high impact of sickle cell disease (SCD) on patients' daily lives globally. In this study, we analyzed whether the reported burden differed between patients from the USA (<jats:italic>n<\/jats:italic>\u00a0=\u00a0384) and other high\u2010income (HI; <jats:italic>n<\/jats:italic>\u00a0=\u00a0820) or low\u2010 to middle\u2010income (LMI; <jats:italic>n<\/jats:italic>\u00a0=\u00a0941) countries. We assessed symptoms and complications, incidence\/management of vaso\u2010occlusive crises (VOCs), treatment utilization\/satisfaction, and the impact of SCD on education\/employment. Certain symptoms (bone aches, insomnia, and joint stiffness) and complications (swollen\/painful fingers\/toes, gallstones, vision problems, blood clots, and asthma) were reported proportionally more by patients in the USA than in the HI\/LMI countries. Self\u2010reported VOCs were more common (mean [SD]: 7.1 [5.7] vs. 5.5 [8.9] and 4.4 [4.6] in the previous 12\u2009months) and were managed more often by hospitalization (52% vs. 24% and 32%) in the USA than the HI and LMI countries. A higher proportion of patients from the USA than the HI\/LMI countries reported a negative impact of SCD on their employment\/schooling. Although high overall satisfaction with current treatments was reported globally, most patients indicated a strong desire for alternative pain medications. There are likely several reasons for the relatively high patient\u2010reported burden in the USA group compared with the HI\/LMI countries, including an older population and differences in newborn screening programs and pediatric\/adult transition of care. It is clear that there is an urgent need for improved understanding and management of SCD globally, not just in the USA.<\/jats:p>","DOI":"10.1002\/ajh.26576","type":"journal-article","created":{"date-parts":[[2022,4,26]],"date-time":"2022-04-26T20:00:31Z","timestamp":1651003231000},"page":"1055-1064","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":18,"title":["Burden of disease, treatment utilization, and the impact on education and employment in patients with sickle cell disease: A comparative analysis of high\u2010 and low\u2010 to middle\u2010income countries for the international Sickle Cell World Assessment Survey"],"prefix":"10.1002","volume":"97","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0996-2148","authenticated-orcid":false,"given":"Ifeyinwa","family":"Osunkwo","sequence":"first","affiliation":[{"name":"Sickle Cell Disease Enterprise, The Levine Cancer Institute, Atrium Health  Charlotte North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"James","sequence":"additional","affiliation":[{"name":"Sickle Cell Society  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8583-0526","authenticated-orcid":false,"given":"Fuad","family":"El\u2010Rassi","sequence":"additional","affiliation":[{"name":"Emory University School of Medicine and Georgia Comprehensive Sickle Cell Center at Grady Health System  Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alecia","family":"Nero","sequence":"additional","affiliation":[{"name":"University of Texas Southwestern Medical Center  Dallas Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7059-2959","authenticated-orcid":false,"given":"Caterina P.","family":"Minniti","sequence":"additional","affiliation":[{"name":"Albert Einstein College of Medicine  New York New York 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