{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T11:31:39Z","timestamp":1792150299527,"version":"4.4.0"},"reference-count":43,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2021,2,25]],"date-time":"2021-02-25T00:00:00Z","timestamp":1614211200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004336","name":"Novartis","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004336","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":[[2021,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Sickle cell disease (SCD) is a genetic disorder, characterized by hemolytic anemia and vaso\u2010occlusive crises (VOCs). Data on the global SCD impact on quality of life (QoL) from the patient viewpoint are limited. The international Sickle Cell World Assessment Survey (SWAY) aimed to provide insights into patient\u2010reported impact of SCD on QoL. This cross\u2010sectional survey of SCD patients enrolled by healthcare professionals and advocacy groups assessed disease impact on daily life, education and work, symptoms, treatment goals, and disease management. Opinions were captured using a Likert scale of 1\u20107 for some questions; 5\u20107 indicated \u201chigh severity\/impact.\u201d Two thousand one hundred and forty five patients (mean age 24.7\u2009years [standard deviation (SD) = 13.1], 39% \u226418\u2009years, 52% female) were surveyed from 16 countries (six geographical regions). A substantial proportion of patients reported that SCD caused a high negative impact on emotions (60%) and school achievement (51%) and a reduction in work hours (53%). A mean of 5.3 VOCs (SD = 6.8) was reported over the 12\u2009months prior to survey (median 3.0 [interquartile range 2.0\u20106.0]); 24% were managed at home and 76% required healthcare services. Other than VOCs, fatigue was the most commonly reported symptom in the month before survey (65%), graded \u201chigh severity\u201d by 67% of patients. Depression and anxiety were reported by 39% and 38% of patients, respectively. The most common patient treatment goal was improving QoL (55%). Findings from SWAY reaffirm that SCD confers a significant burden on patients, epitomized by the high impact on patients\u02bc QoL and emotional wellbeing, and the high prevalence of self\u2010reported VOCs and other symptoms.<\/jats:p>","DOI":"10.1002\/ajh.26063","type":"journal-article","created":{"date-parts":[[2020,12,2]],"date-time":"2020-12-02T17:44:17Z","timestamp":1606931057000},"page":"404-417","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":200,"title":["Impact of sickle cell disease on patients\u02bc daily lives, symptoms reported, and disease management strategies: Results from the international\n                    <scp>Sickle Cell World Assessment Survey<\/scp>\n                    (\n                    <scp>SWAY<\/scp>\n                    )"],"prefix":"10.1002","volume":"96","author":[{"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":"Biree","family":"Andemariam","sequence":"additional","affiliation":[{"name":"New England Sickle Cell Institute, University of Connecticut Health  Farmington Connecticut 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 USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2643-765X","authenticated-orcid":false,"given":"Baba P. D.","family":"Inusa","sequence":"additional","affiliation":[{"name":"Evelina Children\u02bcs Hospital Guy\u02bcs and St Thomas\u02bc NHS Foundation Trust  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fuad","family":"El Rassi","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":"Beverley","family":"Francis\u2010Gibson","sequence":"additional","affiliation":[{"name":"Sickle Cell Disease Association of America  Baltimore Maryland 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"}]},{"given":"Cassandra","family":"Trimnell","sequence":"additional","affiliation":[{"name":"Sickle Cell 101  San Jose California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miguel R.","family":"Abboud","sequence":"additional","affiliation":[{"name":"American University of Beirut Medical Center  Beirut Lebanon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jean\u2010Beno\u00eet","family":"Arlet","sequence":"additional","affiliation":[{"name":"Sickle Cell Disease Referral Centre, Internal Medicine Department, H\u00f4pital Europ\u00e9en Georges\u2010Pompidou, AP\u2010HP Universit\u00e9 de Paris  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raffaella","family":"Colombatti","sequence":"additional","affiliation":[{"name":"Azienda Ospedale\u2010Universit\u00e0 di Padova  Padova Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mariane","family":"de Montalembert","sequence":"additional","affiliation":[{"name":"H\u00f4pital Universitaire Necker\u2010Enfants Malades  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suman","family":"Jain","sequence":"additional","affiliation":[{"name":"Thalassemia and Sickle Cell Society  Hyderabad India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wasil","family":"Jastaniah","sequence":"additional","affiliation":[{"name":"Umm Al\u2010Qura University  Mecca Saudi Arabia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erfan","family":"Nur","sequence":"additional","affiliation":[{"name":"Academic Medical Center  Amsterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marimilia","family":"Pita","sequence":"additional","affiliation":[{"name":"Pediatric Hematology, Hospital Samaritano Laureate University\u2010UAM  S\u00e3o Paulo Brazil"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurie","family":"DeBonnett","sequence":"additional","affiliation":[{"name":"Novartis Pharmaceuticals Corporation  East Hanover New Jersey USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas","family":"Ramscar","sequence":"additional","affiliation":[{"name":"Novartis Pharma AG  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom","family":"Bailey","sequence":"additional","affiliation":[{"name":"Adelphi Real World  Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olivera","family":"Rajkovic\u2010Hooley","sequence":"additional","affiliation":[{"name":"Adelphi Real World  Bollington UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"James","sequence":"additional","affiliation":[{"name":"Sickle Cell Society  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,2,25]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordjournals.aje.a010288"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(17)30193-9"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(13)70150-5"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.20336"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.chest.2015.12.016"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pathol.2016.10.002"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.24557"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199406093302303"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2018-10-880575"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-3-50"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsv063"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.21905"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.22497"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1348\/135910702760213715"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12878-019-0141-8"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1080\/08880018.2019.1660743"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.25503"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00277-017-3082-y"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/s10194-018-0946-z"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clgc.2017.09.015"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.59.suppl_1.i28"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2036.2006.02774.x"},{"key":"e_1_2_10_24_1","volume-title":"Clinical Review Report: Baricitinib (Olumiant): (Eli Lilly Canada Inc.): Indication: For Use in Combination with Methotrexate (MTX) for the Treatment of Adult Patients with Moderate to Severe Rheumatoid Arthritis Who Have Responded Inadequately to One or More Disease\u2010Modifying Antirheumatic Drugs (DMARDs). Baricitinib May Also Be Used as Monotherapy in Cases of Intolerance to MTX","author":"CADTH Common Drug Reviews","year":"2019"},{"key":"e_1_2_10_25_1","unstructured":"World Bank. Country and lending groups.https:\/\/datahelpdesk.worldbank.org\/knowledgebase\/articles\/906519#High_income. Accessed January 21 2021."},{"key":"e_1_2_10_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedhc.2009.12.006"},{"key":"e_1_2_10_27_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0079923"},{"issue":"1","key":"e_1_2_10_28_1","first-page":"10.15436\/2381\u20101","article-title":"Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease","volume":"1","author":"Bemrich\u2010Stolz CJ","year":"2015","journal-title":"Int J Hematol Ther"},{"key":"e_1_2_10_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12529-016-9538-y"},{"issue":"1","key":"e_1_2_10_30_1","first-page":"69","article-title":"Predictors and correlates of fatigue in sickle cell disease patients","volume":"12","author":"Ahmadi M","year":"2018","journal-title":"Int J Hematol Oncol Stem Cell Res"},{"key":"e_1_2_10_31_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.2010.01376.x"},{"key":"e_1_2_10_32_1","doi-asserted-by":"publisher","DOI":"10.1177\/1043454213514632"},{"key":"e_1_2_10_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.14023"},{"key":"e_1_2_10_34_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12878-017-0077-9"},{"key":"e_1_2_10_35_1","doi-asserted-by":"publisher","DOI":"10.3324\/haematol.2011.047365"},{"key":"e_1_2_10_36_1","doi-asserted-by":"publisher","DOI":"10.36469\/9667"},{"key":"e_1_2_10_37_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-148-2-200801150-00004"},{"key":"e_1_2_10_38_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0214355"},{"key":"e_1_2_10_39_1","doi-asserted-by":"publisher","DOI":"10.1590\/1516-3180.2013.1314467"},{"key":"e_1_2_10_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)30732-X"},{"key":"e_1_2_10_41_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2009.01.007"},{"key":"e_1_2_10_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0027-9684(15)31069-5"},{"key":"e_1_2_10_43_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-017-0713-x"},{"key":"e_1_2_10_44_1","doi-asserted-by":"publisher","DOI":"10.1586\/ehm.10.22"}],"container-title":["American Journal of Hematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajh.26063","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ajh.26063","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ajh.26063","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,26]],"date-time":"2023-08-26T22:28:56Z","timestamp":1693088936000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ajh.26063"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,25]]},"references-count":43,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2021,4]]}},"alternative-id":["10.1002\/ajh.26063"],"URL":"https:\/\/doi.org\/10.1002\/ajh.26063","archive":["Portico"],"relation":{},"ISSN":["0361-8609","1096-8652"],"issn-type":[{"value":"0361-8609","type":"print"},{"value":"1096-8652","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,2,25]]},"assertion":[{"value":"2020-11-17","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2020-11-29","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-02-25","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}