{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,27]],"date-time":"2026-05-27T13:46:44Z","timestamp":1779889604610,"version":"3.53.1"},"reference-count":27,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2023,7,3]],"date-time":"2023-07-03T00:00:00Z","timestamp":1688342400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["K23 HL141445"],"award-info":[{"award-number":["K23 HL141445"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["European J of Haematology"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>To assess the impact of organ involvement on patient\u2010reported outcomes (PROs) in light chain (AL) amyloidosis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>PROs were evaluated using the KCCQ\u201012, PROMIS\u201029\u2009+\u20092, and SF\u201036 in individuals with AL amyloidosis. The 2004 Mayo system was used to stage disease and cardiac, neurologic, and renal involvement was considered. Global physical and mental health (MH) scores, physical function (PF), fatigue, social function (SF), pain, sleep, and MH domains were evaluated. Effect sizes between scores were measured using Cohen's <jats:italic>d<\/jats:italic>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of 297 respondents, the median age at diagnosis was 60\u2009years with 58% cardiac, 58% renal, and 30% neurologic involvement. Fatigue, PF, SF, and global physical health with PROMIS and SF\u201036 discriminated the most by stage. Significant discrimination in PROMIS and\/or SF\u201036 was seen in PF, fatigue, and global physical health with cardiac involvement. For neurologic involvement, PF, fatigue, SF, pain, sleep, global physical, and MH with PROMIS and role physical, vitality, pain, general health, and physical component summary with SF\u201036 were discriminatory. For renal amyloid, pain by SF\u201036 and PROMIS, and SF\u201036 MH and role emotional subscales were significant.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Fatigue, PF, SF, and global physical health can discriminate stage, cardiac and neurologic, but not renal, AL amyloidosis involvement.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ejh.14036","type":"journal-article","created":{"date-parts":[[2023,7,4]],"date-time":"2023-07-04T05:36:20Z","timestamp":1688448980000},"page":"536-543","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Differences in patient\u2010reported outcomes (<scp>PROs<\/scp>) by disease severity in light chain (<scp>AL<\/scp>) amyloidosis"],"prefix":"10.1111","volume":"111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1092-5643","authenticated-orcid":false,"given":"Anita","family":"D'Souza","sequence":"first","affiliation":[{"name":"Division of Hematology\/Oncology, Department of Medicine Medical College of Wisconsin  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aniko","family":"Szabo","sequence":"additional","affiliation":[{"name":"Division of Biostatistics Institute for Health and Equity, Medical College of Wisconsin  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Idayat","family":"Akinola","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology, Department of Medicine Medical College of Wisconsin  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Muriel","family":"Finkel","sequence":"additional","affiliation":[{"name":"Amyloidosis Support Groups, Inc  Phoenix Arizona USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4427-3583","authenticated-orcid":false,"given":"Kathryn E.","family":"Flynn","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Oncology, Department of Medicine Medical College of Wisconsin  Milwaukee Wisconsin USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,3]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.14889"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1182\/asheducation\u20102017.1.1"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.26569"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2004.03.029"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136\u2010021\u201002943\u2010w"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010016\u20100564\u20102"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCHEARTFAILURE.121.009038"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.2147\/PROM.S399658"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s41687\u2010017\u20100020\u20107"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.2147\/PROM.S146849"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1080\/13506129.2020.1713743"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41408\u2010021\u201000412\u20108"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/10428194.2019.1623885"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2020.09.542"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.118.038169"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11897\u2010019\u201000446\u2010x"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCOUTCOMES.115.001958"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.04.011"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X18776637"},{"key":"e_1_2_9_21_1","unstructured":"HealthMeasures Scoring Instructions.https:\/\/staging.healthmeasures.net\/score-and-interpret\/calculate-scores\/scoring-instructions"},{"key":"e_1_2_9_22_1","volume-title":"User's Manual for the Medical Outcomes Study (MOS) Core Measures of Health\u2010Related Quality of Life","author":"Hays R","year":"1995"},{"key":"e_1_2_9_23_1","unstructured":"https:\/\/www.rand.org\/health-care\/surveys_tools\/mos\/36-item-short-form\/scoring.html"},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477\u20107525\u20105\u201054"},{"key":"e_1_2_9_25_1","volume-title":"Statistical Power Analysis for the Behavioural Sciences","author":"Cohen J","year":"1988"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2016.71.4410"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.3109\/13506129.2015.1102131"},{"key":"e_1_2_9_28_1","doi-asserted-by":"crossref","unstructured":"\u00a0D\u2019Souza A Szabo A Akinola I Finkel M Flynn KE. A cross sectional study of patient reported outcomes and symptom burden using PROMIS and PRO CTCAE measures in light chain amyloidosis. Qual Life Res. 2023;32:1807\u20101817. doi:10.1007\/s11136-023-03354-9","DOI":"10.1007\/s11136-023-03354-9"}],"container-title":["European Journal of Haematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ejh.14036","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T11:27:12Z","timestamp":1694777232000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ejh.14036"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,3]]},"references-count":27,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,10]]}},"alternative-id":["10.1111\/ejh.14036"],"URL":"https:\/\/doi.org\/10.1111\/ejh.14036","archive":["Portico"],"relation":{},"ISSN":["0902-4441","1600-0609"],"issn-type":[{"value":"0902-4441","type":"print"},{"value":"1600-0609","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,3]]},"assertion":[{"value":"2023-05-11","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-06-23","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-07-03","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}