{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T06:03:27Z","timestamp":1789625007852,"version":"build-2803163510"},"reference-count":22,"publisher":"SAGE Publications","issue":"10","license":[{"start":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T00:00:00Z","timestamp":1785542400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["1R01HL124945 and 1R01HL124945-S1"],"award-info":[{"award-number":["1R01HL124945 and 1R01HL124945-S1"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["West J Nurs Res"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Reliable longitudinal measurement is essential for tracking quality of life (QoL) in sickle cell disease (SCD). The multiple domains of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) have not been evaluated for their longitudinal consistency across repeated observations in real-world SCD cohorts with chronic pain.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>We sought to evaluate the consistency of ASCQ-Me scores across repeated observations over 18 months and to examine their association with average pain intensity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>We used a repeated-measures longitudinal observational study among adults with SCD. Participants (N\u2009=\u2009186, mean (\u00b1SD) age: 36.6\u2009\u00b1\u200911.7\u2009years, 62% female) completed ASCQ-Me measures at 4 time points, approximately 6\u2009months apart. Average pain intensity (API; 0-10) was computed as the mean of pain now, the least pain in the last 24\u2009hours, and the worst pain in the last 24\u2009hours. Analysis included Cronbach\u2019s alphas, intraclass correlation coefficient (ICC), and linear regression mixed models.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      Cronbach\u2019s alphas were high and stable across all domains (0.73-0.92), except for Pain Episodes Severity (\u03b1\u2009=\u20090.63). Means across time varied by no more than 2.2 points with moderate-to-high ICC (0.42-0.68), indicating consistent score behavior across time points. Average pain intensity was strongly associated with every ASCQ-Me subscale (\n                      <jats:italic toggle=\"yes\">P<\/jats:italic>\n                      \u2009&lt;\u2009.001 for all, except\n                      <jats:italic toggle=\"yes\">Pain Episodes Severity<\/jats:italic>\n                      ,\n                      <jats:italic toggle=\"yes\">P<\/jats:italic>\n                      \u2009=\u2009.002).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>ASCQ-Me scores were consistent over 18 months and demonstrated clinically coherent associations with pain burden in adults with SCD. Findings support the use of ASCQ-Me for monitoring QoL trajectories and for clinical studies targeting SCD symptoms and function.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/01939459261468966","type":"journal-article","created":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T07:49:37Z","timestamp":1785570577000},"page":"1107-1114","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Consistency of ASCQ-Me Scores Across Repeated Measures in Sickle Cell Disease"],"prefix":"10.1177","volume":"48","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1308-8366","authenticated-orcid":false,"given":"Rachael O.","family":"Ajiboye","sequence":"first","affiliation":[{"name":"Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5389-2717","authenticated-orcid":false,"given":"Yingwei","family":"Yao","sequence":"additional","affiliation":[{"name":"Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0065-0236","authenticated-orcid":false,"given":"Yenisel","family":"Cruz-Almeida","sequence":"additional","affiliation":[{"name":"Department of Community Dentistry &amp; Behavioral Science, College of Dentistry; Pain Research &amp; Intervention Center of Excellence (PRICE), College of Dentistry, University of Florida, Gainesville, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6188-8969","authenticated-orcid":false,"given":"Miriam O.","family":"Ezenwa","sequence":"additional","affiliation":[{"name":"Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3496-4655","authenticated-orcid":false,"given":"Zaijie J.","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Biopharmaceutical Sciences, College of Pharmacy, Cancer Center, University of Illinois at Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3623-7395","authenticated-orcid":false,"given":"Robert E.","family":"Molokie","sequence":"additional","affiliation":[{"name":"Department of Biopharmaceutical Sciences, College of Pharmacy, Cancer Center, University of Illinois at Chicago, Chicago, IL, USA"},{"name":"Division of Hematology\/Oncology, University of Illinois at Chicago College of Medicine, Chicago, IL, USA"},{"name":"Department of Hematology\/Oncology, Jessie Brown Veterans\u2019 Administration Medical Center, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3954-8933","authenticated-orcid":false,"given":"Diana J.","family":"Wilkie","sequence":"additional","affiliation":[{"name":"Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,8,1]]},"reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","DOI":"10.1097\/AJP.0000000000000054"},{"key":"e_1_3_2_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-017-0661-5"},{"key":"e_1_3_2_4_2","doi-asserted-by":"publisher","DOI":"10.1080\/13548506.2021.2019808"},{"key":"e_1_3_2_5_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-019-1136-7"},{"key":"e_1_3_2_6_2","doi-asserted-by":"publisher","DOI":"10.2147\/JPR.S469999"},{"key":"e_1_3_2_7_2","doi-asserted-by":"publisher","DOI":"10.2190\/PM.47.1.a"},{"key":"e_1_3_2_8_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpain.2023.07.029"},{"key":"e_1_3_2_9_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2013.08.020"},{"key":"e_1_3_2_10_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpain.2019.11.002"},{"key":"e_1_3_2_11_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-014-0125-0"},{"key":"e_1_3_2_12_2","unstructured":"Keller S Yang M E C Cowans T. 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