{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,25]],"date-time":"2026-06-25T17:39:43Z","timestamp":1782409183822,"version":"3.54.5"},"reference-count":31,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2025,8,4]],"date-time":"2025-08-04T00:00:00Z","timestamp":1754265600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000054","name":"National Cancer Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000054","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100012524","name":"American Lebanese Syrian Associated Charities","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100012524","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Navigating prognostic communication is challenging for clinicians caring for adolescents and young adults (AYAs) with poor\u2010prognosis cancer. Presently, little is known about how AYA and parent preferences for prognostic disclosure evolve over time. This study explored communication preferences at key illness milestones of disease progression to inform individualized, person\u2010centered approaches to optimize prognostic disclosure.<\/jats:p><\/jats:sec><jats:sec><jats:title>Procedure<\/jats:title><jats:p>Sixty\u2010five participants, including 25 AYAs aged 12\u201325\u00a0years and 40 parents, were recruited at distinct illness timepoints\u2014diagnosis, relapse\/progression, Phase I\/II trial enrollment, and bereavement\u2014to participate in semi\u2010structured interviews about their preferences for timing, style, and content of prognostic communication. Rapid analysis was conducted to generate and compare themes across timepoints.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Preferences for early, ongoing, and repeated prognostic discussions were increasingly reported by AYAs and parents at advancing illness milestones, with bereaved parents particularly emphasizing the value of early disclosure in retrospect. Parents of living AYAs, though not bereaved parents, advised oncologists to consider excluding AYAs from prognostic conversations\u2014a view rarely shared by AYAs themselves. AYAs and parents preferred oncologist\u2010led communication and also advocated for the inclusion of multidisciplinary clinicians.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>These findings highlight the dynamic nature of prognostic communication preferences across the illness trajectory and key variances between AYA and parents' preferences. Early and serial prognostic conversations are welcomed by many AYAs and parents, and multidisciplinary support may enhance communication satisfaction, particularly as preferences shift over time. Future research will investigate longitudinal interventions that recognize evolving communication preferences to personalize prognostic disclosure across pediatric cancer care.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pbc.31964","type":"journal-article","created":{"date-parts":[[2025,8,5]],"date-time":"2025-08-05T05:03:21Z","timestamp":1754370201000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Differences in Patient and Parent Preferences for Prognostic Communication Across Disease Milestones in Advanced Childhood Cancer"],"prefix":"10.1002","volume":"72","author":[{"given":"Rachel A.","family":"Kentor","sequence":"first","affiliation":[{"name":"Divisions of Palliative Care and Psychology Department of Pediatrics Baylor College of Medicine\/Texas Children's Hospital  Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shoshana","family":"Mehler","sequence":"additional","affiliation":[{"name":"Department of Oncology St. Jude Children's Research Hospital  Memphis Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Christianson","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology NYU Langone Health  New York City New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harmony","family":"Farner","sequence":"additional","affiliation":[{"name":"Department of Oncology St. Jude Children's Research Hospital  Memphis Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4250-6160","authenticated-orcid":false,"given":"Tara M.","family":"Brinkman","sequence":"additional","affiliation":[{"name":"Department of Psychology and Biobehavioral Sciences St. Jude Children's Research Hospital  Memphis Tennessee USA"},{"name":"Department of Epidemiology and Cancer Control St. Jude Children's Research Hospital  Memphis Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Justin N.","family":"Baker","sequence":"additional","affiliation":[{"name":"Division of Quality of Life and Pediatric Palliative Care Department of Pediatrics Stanford University and Stanford Medicine Children's Health  Palo Alto California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6491-6649","authenticated-orcid":false,"given":"Pamela S.","family":"Hinds","sequence":"additional","affiliation":[{"name":"Department of Nursing Science, Professional Practice &amp; Quality, Children's National Hospital  Washington District of Columbia USA"},{"name":"Department of Pediatrics School of Medicine and Health Sciences The George Washington University  Washington District of Columbia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5791-4178","authenticated-orcid":false,"given":"Jennifer W.","family":"Mack","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology Dana\u2010Farber Cancer Institute  Boston Massachusetts USA"},{"name":"Division of Population Sciences\u2019 Center for Outcomes and Policy Research, Dana\u2010Farber Cancer Institute  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6522-3876","authenticated-orcid":false,"given":"Erica C.","family":"Kaye","sequence":"additional","affiliation":[{"name":"Department of Oncology St. Jude Children's Research Hospital  Memphis Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,8,4]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016\u20101278"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2005.11.015"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/SPC.0000000000000118"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.32533"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.30827"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2006.06.5326"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2020\u2010044503"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2022.0265"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951522001705"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1200\/OP.24.00249"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2024.50489"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2024.50427"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.30716"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_8_16_1","unstructured":"R.EpsteinandR.Street. \u201cPatient\u2010Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering \u201dNCI https:\/\/cancercontrol.cancer.gov\/sites\/default\/files\/2020\u201006\/pcc_monograph.pdf."},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732320921835"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012\u2010019\u20100853\u2010y"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen\u20102017\u2010019993"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2025.5431"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2017.1589"},{"key":"e_1_2_8_22_1","first-page":"11","volume-title":"Pediatric Consultation\u2010Liaison: Models and Roles in Pediatric Psychology","author":"Carter B. D.","year":"2020"},{"key":"e_1_2_8_23_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.mop.0000193266.86129.47"},{"key":"e_1_2_8_24_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2012.42.3004"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29354"},{"key":"e_1_2_8_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.25675"},{"key":"e_1_2_8_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2018.07.002"},{"key":"e_1_2_8_28_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2016.69.1634"},{"key":"e_1_2_8_29_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa040366"},{"key":"e_1_2_8_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2021.03.031"},{"key":"e_1_2_8_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2015.02.003"},{"key":"e_1_2_8_32_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.25918"}],"container-title":["Pediatric Blood &amp; Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/pbc.31964","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,9,24]],"date-time":"2025-09-24T04:41:53Z","timestamp":1758688913000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/pbc.31964"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,4]]},"references-count":31,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2025,11]]}},"alternative-id":["10.1002\/pbc.31964"],"URL":"https:\/\/doi.org\/10.1002\/pbc.31964","archive":["Portico"],"relation":{},"ISSN":["1545-5009","1545-5017"],"issn-type":[{"value":"1545-5009","type":"print"},{"value":"1545-5017","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,4]]},"assertion":[{"value":"2025-05-01","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-07-21","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-08-04","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e31964"}}