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We used measures from the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ\u2010Me), Patient Reported Outcomes Measurement Information System (PROMIS), and Quality of Life in Neurological Disorders (NeuroQol) to evaluate pain impact, sleep impact, social functioning, depressive symptoms, tiredness, and cognitive function (collectively, patient reported outcomes [PROs]) and to identify associated demographic and clinical characteristics. Participants (n = 2201) between 18 and 45\u2009years were recruited through the eight Sickle Cell Disease Implementation Consortium (SCDIC) sites. In multivariate models, PROs were significantly associated with one another. Pain impact was associated with age, education, employment, time since last pain attack, hydroxyurea use, opioid use, sleep impact, social functioning, and cognitive function (<jats:italic>F\u2009=<\/jats:italic>\u200988.74, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001). Sleep impact was associated with household income, opioid use, pain impact, social functioning, depressive symptoms, and tiredness (<jats:italic>F\u2009=<\/jats:italic>\u2009101.40, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001). Social functioning was associated with employment, pain attacks in the past year, autoimmune\/inflammatory comorbidities, pain impact, sleep impact, depressive symptoms, tiredness, and cognitive function (<jats:italic>F\u2009=<\/jats:italic>\u2009121.73, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001). Depressive symptoms were associated with sex, sleep impact, social functioning, tiredness, and cognitive function (<jats:italic>F\u2009=<\/jats:italic>\u2009239.51, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001). Tiredness was associated with sex, education, sleep impact, social functioning, depressive symptoms, and cognitive function (<jats:italic>F\u2009=<\/jats:italic>\u2009129.13, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001). These findings reflect the baseline PRO assessments among SCDIC registry participants. Further research is needed to better understand these outcomes and new targets for interventions to improve quality of life and function in people with SCD.<\/jats:p>","DOI":"10.1002\/ajh.25880","type":"journal-article","created":{"date-parts":[[2020,5,25]],"date-time":"2020-05-25T16:46:21Z","timestamp":1590425181000},"page":"1066-1074","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":48,"title":["Patient\u2010reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium"],"prefix":"10.1002","volume":"95","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2938-6125","authenticated-orcid":false,"given":"Mitchell R.","family":"Knisely","sequence":"first","affiliation":[{"name":"Department of Medicine, School of Nursing Duke University  Durham North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Norma","family":"Pugh","sequence":"additional","affiliation":[{"name":"RTI International  North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"Kroner","sequence":"additional","affiliation":[{"name":"RTI International  North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1431-8840","authenticated-orcid":false,"given":"Rita","family":"Masese","sequence":"additional","affiliation":[{"name":"Department of Medicine, School of Nursing Duke University  Durham North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4725-7295","authenticated-orcid":false,"given":"Victor","family":"Gordeuk","sequence":"additional","affiliation":[{"name":"Department of Medicine University of Illinois at Chicago  Chicago Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison A.","family":"King","sequence":"additional","affiliation":[{"name":"Program in Occupational Therapy and Pediatrics, Division of Hematology and Oncology Washington University School of Medicine  St. Louis Missouri"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon M.","family":"Smith","sequence":"additional","affiliation":[{"name":"National Heart, Lung, and Blood Institute  Bethesda Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James G.","family":"Gurney","sequence":"additional","affiliation":[{"name":"Division of Epidemiology, Biostatistics and Environmental Health University of Memphis  Memphis Tennessee"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"Adams","sequence":"additional","affiliation":[{"name":"Department of Neurology Medical University of South Carolina  Charleston South Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ted","family":"Wun","sequence":"additional","affiliation":[{"name":"Division of Hematology and Oncology University of California Davis School of Medicine  Sacramento California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Snyder","sequence":"additional","affiliation":[{"name":"Department of Public Management and Policy Georgia State University  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey","family":"Glassberg","sequence":"additional","affiliation":[{"name":"Department of Emergency Medicine Icahn School of Medicine at Mt. 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