{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T10:25:21Z","timestamp":1777890321004,"version":"3.51.4"},"reference-count":35,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2014,3,1]],"date-time":"2014-03-01T00:00:00Z","timestamp":1393632000000},"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":["Rare Tumors"],"published-print":{"date-parts":[[2014,3,18]]},"abstract":"<jats:p>Little is known about the end-of-life (EOL) experience of patients with rare cancers (PRC) or their caregivers. From September 2002 to August 2008, 618 stage IV cancer patients [195 PRC and 423 patients with common cancers (PCC)] and their caregivers participated in an interview-based cohort study. Patients were interviewed about EOL preferences, planning, medical care, and followed until death. Interviews with caregivers at baseline assessed caregiver mental and physical health; and postmortem, assessed EOL patient care. PRC were four times more likely than PCC to be receiving both radiation and chemotherapy at study entry (10.3% vs 3.3%, respectively, adjusted odds ratio 4.31, P=0.003). PRC's caregivers were more likely to report declining health (22.1% vs 15.7%, P=0.05) and marginally more likely to report using mental health services to cope than PCC's caregivers. PRC were as likely to acknowledge their illness was terminal, have EOL discussions, and participate in advance care planning as PCC. Future research should investigate terminal care for PRC and how providing care affects caregivers\u2019 physical and mental health.<\/jats:p>","DOI":"10.4081\/rt.2014.5281","type":"journal-article","created":{"date-parts":[[2014,11,7]],"date-time":"2014-11-07T05:04:53Z","timestamp":1415336693000},"page":"24-27","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":8,"title":["The End-of-Life Experience of Patients with Rare Cancers and their Caregivers"],"prefix":"10.1177","volume":"6","author":[{"given":"Elizabeth Trice","family":"Loggers","sequence":"first","affiliation":[{"name":"Group Health Research Institute, Group Health Cooperative, Seattle, WA, USA"},{"name":"Fred Hutchinson Cancer Research Center, Seattle, WA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Holly G.","family":"Prigerson","sequence":"additional","affiliation":[{"name":"Center for Psychosocial Epidemiology and Outcomes, Dana-Farber Cancer Institute, Boston, MA, USA"},{"name":"Department of Psychiatry, Brigham and Women's Hospital, Boston, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2014,3,1]]},"reference":[{"key":"bibr1-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1001\/jama.290.1.116"},{"key":"bibr2-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejca.2006.08.028"},{"key":"bibr3-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.4081\/rt.2010.e49"},{"key":"bibr4-rt.2014.5281","author":"Young JL WK","journal-title":"SEER survival monograph: cancer survival among adults: US SEER Program, 1988-2001, Patient and Tumor Characteristics"},{"key":"bibr5-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1177\/003335491012500106"},{"key":"bibr6-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(05)70471-X"},{"key":"bibr7-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.327.7405.47"},{"key":"bibr8-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1177\/107327480401100504"},{"key":"bibr9-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-3-33"},{"key":"bibr10-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.3390\/medicina43060054"},{"key":"bibr11-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1038\/bjc.2013.406"},{"key":"bibr12-rt.2014.5281","unstructured":"KeatNLawKSeymourM International rare cancers initiative. 2013. Available from: http:\/\/ecancer.org\/journal\/editorial\/20-international-rare-cancers-initiative-irci.php."},{"key":"bibr13-rt.2014.5281","first-page":"e13","author":"Putkowski S.","year":"2010","journal-title":"Rare Tumors"},{"key":"bibr14-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.4081\/rt.2012.e24"},{"key":"bibr15-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(00)00273-4"},{"key":"bibr16-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.2471\/BLT.06.031518"},{"key":"bibr17-rt.2014.5281","first-page":"e273","volume":"16","author":"Drummond M","year":"2009","journal-title":"Can J Clin Pharmacol"},{"key":"bibr18-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/91.24.2070"},{"key":"bibr19-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1001\/jama.285.6.805-JMS0214-2-1"},{"key":"bibr20-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.061623"},{"key":"bibr21-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1177\/160940690900800404"},{"key":"bibr22-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2009.0470"},{"key":"bibr23-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1177\/0272989X07307270"},{"key":"bibr24-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2007.09.004"},{"key":"bibr25-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1001\/jama.300.14.1665"},{"key":"bibr26-rt.2014.5281","unstructured":"National Cancer Institute. Common cancer types. 2013. Available from: http:\/\/www.cancer.gov\/cancertopics\/types\/commoncancers."},{"key":"bibr27-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1001\/archpsyc.1992.01820080038006"},{"key":"bibr28-rt.2014.5281","unstructured":"FirstMSpitzerRGibbonMWilliamsJ. Structured clinical interview for the DSM-IV axis I disorders - Patient Edition (SCID-I\/P). Version 2.0 ed. New York: Biometrics Research Department, New York State Psychiatric Institute; 1995."},{"key":"bibr29-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1016\/0021-9681(87)90171-8"},{"key":"bibr30-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.1984.2.3.187"},{"key":"bibr31-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1002\/1097-0142(19800415)45:8<2220::AID-CNCR2820450835>3.0.CO;2-Q"},{"key":"bibr32-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199206000-00002"},{"key":"bibr33-rt.2014.5281","unstructured":"American Cancer Society. Cancer Facts & Figures for Hispancis\/Latinos 2012-2014. Atlanta: American Cancer Society, 2012."},{"key":"bibr34-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.7.1.e10"},{"key":"bibr35-rt.2014.5281","doi-asserted-by":"publisher","DOI":"10.1007\/s10620-006-9213-2"}],"container-title":["Rare Tumors"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.4081\/rt.2014.5281","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.4081\/rt.2014.5281","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.4081\/rt.2014.5281","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T05:35:28Z","timestamp":1777613728000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.4081\/rt.2014.5281"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,3,1]]},"references-count":35,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2014,3,18]]}},"alternative-id":["10.4081\/rt.2014.5281"],"URL":"https:\/\/doi.org\/10.4081\/rt.2014.5281","relation":{},"ISSN":["2036-3613","2036-3613"],"issn-type":[{"value":"2036-3613","type":"print"},{"value":"2036-3613","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,3,1]]}}}