{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T19:19:39Z","timestamp":1790191179430,"version":"4.1.0"},"reference-count":23,"publisher":"Wiley","issue":"23","license":[{"start":{"date-parts":[[2017,8,17]],"date-time":"2017-08-17T00:00:00Z","timestamp":1502928000000},"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":["5U24\u2010CA076518"],"award-info":[{"award-number":["5U24\u2010CA076518"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancer"],"published-print":{"date-parts":[[2017,12]]},"abstract":"<jats:sec><jats:title>BACKGROUND<\/jats:title><jats:p>Allogeneic hematopoietic cell transplantation (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient\u2010reported outcomes (PROs) is increasingly being recognized, but the routine collection of PROs is uncommon. This study evaluated the feasibility of prospective PRO collection by an outcome registry at multiple time points from unselected HCT patients undergoing transplantation at centers contributing clinical data to the Center for International Blood and Marrow Transplant Research (CIBMTR), and then it correlated the PRO data with clinical and demographic data.<\/jats:p><\/jats:sec><jats:sec><jats:title>METHODS<\/jats:title><jats:p>The Functional Assessment of Cancer Therapy\u2013Bone Marrow Transplant (FACT\u2010BMT), 36\u2010Item Short Form Health Survey (SF\u201036), and Pediatric Quality of Life Inventory measures were administered before HCT, on day 100, and at 6 and 12 months. Patients were recruited by the transplant center, but posttransplant PRO collection was managed centrally by the CIBMTR.<\/jats:p><\/jats:sec><jats:sec><jats:title>RESULTS<\/jats:title><jats:p>There were 580 eligible patients, and 390 (67%) enrolled. Feasibility was shown by high time\u2010specific retention rates (176 of 238 at 1 year or 74%) and participant satisfaction. Factors associated with higher response rates were an age\u2009&gt;\u200950 years (odds ratio [OR], 1.58; 95% confidence interval [CI], 1.03\u20102.41; <jats:italic>P<\/jats:italic>\u2009=\u2009.0355), white race (OR, 4.61; 95% CI, 2.66\u20107.99; <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.0001), and being married (OR, 2.28; 95% CI, 1.42\u20103.65; <jats:italic>P<\/jats:italic>\u2009=\u2009.0006) for adults and a higher family income for children (OR, 4.99; 95% CI, 2.12\u201011.75; <jats:italic>P<\/jats:italic>\u2009=\u2009.0002). Importantly, pre\u2010HCT PRO scores independently predicted survival after adjustments for patient\u2010, disease\u2010, and transplant\u2010related factors. The adjusted probabilities of 1\u2010year survival were 56%, 67%, 75%, and 76% by increasing quartiles of the pre\u2010HCT FACT\u2010BMT score and 58%, 72%, 62%, and 82% by increasing quartiles of the pre\u2010HCT SF\u201036 physical component score.<\/jats:p><\/jats:sec><jats:sec><jats:title>CONCLUSIONS<\/jats:title><jats:p>A hybrid model of local consent for centralized PRO collection is feasible, and pretransplant PROs provide critical prognostic information for HCT outcomes. <jats:bold><jats:italic>Cancer<\/jats:italic> 2017;123:4687\u20104700<\/jats:bold>. \u00a9 <jats:italic>2017 American Cancer Society<\/jats:italic>.<\/jats:p><\/jats:sec>","DOI":"10.1002\/cncr.30936","type":"journal-article","created":{"date-parts":[[2017,8,17]],"date-time":"2017-08-17T10:42:43Z","timestamp":1502966563000},"page":"4687-4700","source":"Crossref","is-referenced-by-count":59,"title":["Centralized patient\u2010reported outcome data collection in transplantation is feasible and clinically meaningful"],"prefix":"10.1002","volume":"123","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3317-1896","authenticated-orcid":false,"given":"Bronwen E.","family":"Shaw","sequence":"first","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruta","family":"Brazauskas","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather R.","family":"Millard","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Fonstad","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathryn E.","family":"Flynn","sequence":"additional","affiliation":[{"name":"Center for Patient Care and Outcomes Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Abernethy","sequence":"additional","affiliation":[{"name":"Flatiron Health New York New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenny","family":"Vogel","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charney","family":"Petroske","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah","family":"Mattila","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Drexler","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research Minneapolis Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie J.","family":"Lee","sequence":"additional","affiliation":[{"name":"Clinical Research Division, Fred Hutchinson Cancer Research Center Seattle Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary M.","family":"Horowitz","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. Douglas","family":"Rizzo","sequence":"additional","affiliation":[{"name":"Center for International Blood and Marrow Transplant Research, Medical College of Wisconsin Milwaukee Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,8,17]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2013.12.001"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2008-10-182592"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2005.03.189"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1038\/bmt.2011.130"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1399"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2010.05.017"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-7-102"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29717"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1038\/bmt.2016.113"},{"key":"e_1_2_8_11_1","volume-title":"SF\u201036 Physical and Mental Health Summary Scales: A User's Manual","author":"Ware JE","year":"1994"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bmt.1700672"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsm008"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2005-05-2004"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2011.08.011"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2011.05.022"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-11-99"},{"key":"e_1_2_8_18_1","unstructured":"Pew Research Center.Census Bureau pushes online survey response option.http:\/\/www.pewsocialtrends.org\/2012\/04\/26\/census-bureau-pushes-online-survey-response-option\/."},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-004-2394-2"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2012.11.014"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2015.10.027"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-015-0974-y"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2141.2009.07992.x"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/bmt.2015.122"}],"container-title":["Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fcncr.30936","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acsjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/cncr.30936","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,12]],"date-time":"2025-10-12T17:18:13Z","timestamp":1760289493000},"score":1,"resource":{"primary":{"URL":"https:\/\/acsjournals.onlinelibrary.wiley.com\/doi\/10.1002\/cncr.30936"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,8,17]]},"references-count":23,"journal-issue":{"issue":"23","published-print":{"date-parts":[[2017,12]]}},"alternative-id":["10.1002\/cncr.30936"],"URL":"https:\/\/doi.org\/10.1002\/cncr.30936","archive":["Portico"],"relation":{},"ISSN":["0008-543X","1097-0142"],"issn-type":[{"value":"0008-543X","type":"print"},{"value":"1097-0142","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,8,17]]}}}