{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T15:43:02Z","timestamp":1784648582713,"version":"3.55.0"},"reference-count":37,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2023,2,1]],"date-time":"2023-02-01T00:00:00Z","timestamp":1675209600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Adolescent and Young Adult Oncology"],"published-print":{"date-parts":[[2023,2,1]]},"abstract":"<jats:sec>\n                    <jats:title>Purpose:<\/jats:title>\n                    <jats:p>Adolescents and young adults (AYA) with advanced cancer have unequal access to and enrollment in clinical trials. Many AYA use online platforms to share their treatment experiences. The purpose of this analysis was to explore how AYA discuss clinical trials and their access to novel therapeutics through their blogs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>We studied illness blogs from 22 AYA (ages 16\u201338 years old) with advanced cancer who specifically discussed experiences enrolling in a clinical trial. Nearly 500 excerpts were abstracted from their blogs, and we used qualitative descriptive methodology and thematic analysis to explore their longitudinal perspectives.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>We describe three themes: (1) \u201cBlinded\u201d, which represents the uncertainty in treatment pathway and underrepresentation of AYA in clinical trials, (2) \u201cTotally healthy except for the damn cancer\u201d, which represents the numerous challenges associated with meeting eligibility criteria and lack of available clinical trials, and (3) \u201cGo ahead and send me the bill!\u201d, which represents the precarious financial challenges associated with participating with clinical trials (both direct costs and indirect costs associated with travel, time away from work) as well as the costs of novel therapeutics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>By studying AYA online narratives, we can outline several gaps in accessing clinical trials and generate future research priorities. AYA with advanced cancer are known to have aggressive trajectories, and there are opportunities to integrate patient-reported outcomes and supportive care frameworks embedded within clinical trial study design.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1089\/jayao.2021.0152","type":"journal-article","created":{"date-parts":[[2022,3,2]],"date-time":"2022-03-02T15:23:41Z","timestamp":1646234621000},"page":"53-58","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Perspectives on Access to Novel Therapeutics Through Clinical Trials Among Adolescents and Young Adults with Advanced Cancer: Implications for Patient-Centered Clinical Trials"],"prefix":"10.1177","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7035-8556","authenticated-orcid":false,"given":"Jessica","family":"Keim-Malpass","sequence":"first","affiliation":[{"name":"Department of Acute and Specialty Care, University of Virginia School of Nursing, Charlottesville, Virginia, USA."},{"name":"Department of Pediatrics, University of Virginia School of Medicine, Charlottesville, Virginia, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda B.","family":"Callahan","sequence":"additional","affiliation":[{"name":"Department of Acute and Specialty Care, University of Virginia School of Nursing, Charlottesville, Virginia, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2960-7896","authenticated-orcid":false,"given":"Lisa C.","family":"Lindley","sequence":"additional","affiliation":[{"name":"Department of Nursing, University of Tennessee-Knoxville College of Nursing, Knoxville, Tennessee, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire A.","family":"Templeman","sequence":"additional","affiliation":[{"name":"Department of Acute and Specialty Care, University of Virginia School of Nursing, Charlottesville, Virginia, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8770-1165","authenticated-orcid":false,"given":"Kim","family":"Mooney-Doyle","sequence":"additional","affiliation":[{"name":"Department of Nursing, University of Maryland School of Nursing, Baltimore, Maryland, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2023,2,14]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.21459"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-0122D"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-0122F"},{"issue":"5","key":"e_1_3_3_5_2","first-page":"1579","article-title":"Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital","volume":"25","author":"Sanford SD","year":"2017","unstructured":"Sanford SD, , Beaumont JL, , Snyder MA, et al. Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital. Support Care Cancer. 2017; 25(5):1579\u201386.","journal-title":"Support Care Cancer"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2016.0002"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29669"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27426"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.soncn.2015.05.001"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1097\/COC.0000000000000327"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.26638"},{"key":"e_1_3_3_12_2","doi-asserted-by":"publisher","DOI":"10.1200\/JOP.2015.009084"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27074"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.20995"},{"key":"e_1_3_3_15_2","doi-asserted-by":"crossref","unstructured":"Bleyer A Budd T Montello M. Older adolescents and young adults with cancer and clinical trials: lack of participation and progress in North America. In: Cancer in Adolescents and Young Adults 2007; pp. 71\u201381.","DOI":"10.1007\/978-3-540-68152-6_5"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.29230"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1080\/23294515.2015.1034381"},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2003-0913-L"},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1177\/1043454215600424"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1097\/NCC.0b013e31824eb879"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1188\/12.ONF.373-378"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2015.0003"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1177\/0193945913492897"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2014.06.003"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1002\/nur.20362"},{"key":"e_1_3_3_26_2","unstructured":"Naturalistic Inquiry | SAGE Publications Inc. Accessed November28 2020 from https:\/\/us.sagepub.com\/en-us\/nam\/naturalistic-inquiry\/book842"},{"key":"e_1_3_3_27_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2013.0661"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.1097\/MLR.0000000000000437"},{"key":"e_1_3_3_29_2","first-page":"117","article-title":"An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life","volume":"9","author":"Keim-Malpass J","year":"2018","unstructured":"Keim-Malpass J, , Cohrs AC, , Lindley LC, , Leslie DL. An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life. Adolesc Health Med Ther. 2018; 9:117\u201320.","journal-title":"Adolesc Health Med Ther"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2021.06.012"},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1634\/theoncologist.2015-0481"},{"key":"e_1_3_3_32_2","doi-asserted-by":"publisher","DOI":"10.1200\/EDBK_100019"},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2015.63.2463"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2019.0120"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1089\/jayao.2019.0051"},{"key":"e_1_3_3_36_2","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/djab014"},{"key":"e_1_3_3_37_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.37573"},{"key":"e_1_3_3_38_2","unstructured":"Institute of Medicine (US). Envisioning a Transformed Clinical Trials Enterprise in the United States: Establishing an Agenda for 2020: Workshop Summary. Washington DC: National Academies Press (US); 2012."}],"container-title":["Journal of Adolescent and Young Adult Oncology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1089\/jayao.2021.0152","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/jayao.2021.0152","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1089\/jayao.2021.0152","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T19:51:14Z","timestamp":1777492274000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1089\/jayao.2021.0152"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,2,1]]},"references-count":37,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2023,2,1]]}},"alternative-id":["10.1089\/jayao.2021.0152"],"URL":"https:\/\/doi.org\/10.1089\/jayao.2021.0152","relation":{},"ISSN":["2156-5333","2156-535X"],"issn-type":[{"value":"2156-5333","type":"print"},{"value":"2156-535X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,2,1]]}}}