{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T19:40:03Z","timestamp":1783021203600,"version":"3.54.6"},"reference-count":29,"publisher":"Elsevier BV","issue":"4","license":[{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T00:00:00Z","timestamp":1782950400000},"content-version":"vor","delay-in-days":731,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"funder":[{"DOI":"10.13039\/100000897","name":"Cystic Fibrosis Foundation","doi-asserted-by":"publisher","award":["GEORGI20QI0"],"award-info":[{"award-number":["GEORGI20QI0"]}],"id":[{"id":"10.13039\/100000897","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","cysticfibrosisjournal.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Cystic Fibrosis"],"published-print":{"date-parts":[[2024,7]]},"DOI":"10.1016\/j.jcf.2023.10.018","type":"journal-article","created":{"date-parts":[[2023,11,10]],"date-time":"2023-11-10T02:42:52Z","timestamp":1699584172000},"page":"804-810","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":6,"title":["Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial"],"prefix":"10.1016","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6288-701X","authenticated-orcid":false,"given":"Stephanie","family":"DiFiglia","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0924-4031","authenticated-orcid":false,"given":"Anna M.","family":"Georgiopoulos","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Russell","family":"Portenoy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8938-4949","authenticated-orcid":false,"given":"Elizabeth","family":"Seng","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Berdella","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6833-5216","authenticated-orcid":false,"given":"Deborah","family":"Friedman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3694-9122","authenticated-orcid":false,"given":"Catherine","family":"Kier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6839-0936","authenticated-orcid":false,"given":"Rachel W.","family":"Linnemann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brandi","family":"Middour-Oxler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-1569-1433","authenticated-orcid":false,"given":"Patricia","family":"Walker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janice","family":"Wang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1711-8227","authenticated-orcid":false,"given":"Lael M.","family":"Yonker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Buehler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-1095-8601","authenticated-orcid":false,"given":"Nivedita","family":"Chaudhary","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Esposito","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theresa","family":"Frantzen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Henthorne","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Amy","family":"Plachta","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Pollinger","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0770-9165","authenticated-orcid":false,"given":"Teresa","family":"Stables-Carney","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Trentacoste","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lara","family":"Dhingra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"3","key":"10.1016\/j.jcf.2023.10.018_bib0001","doi-asserted-by":"crossref","first-page":"456","DOI":"10.1016\/j.jcf.2022.01.009","article-title":"Worldwide rates of diagnosis and effective treatment for cystic fibrosis","volume":"21","author":"Guo","year":"2022","journal-title":"J Cyst Fibros"},{"key":"10.1016\/j.jcf.2023.10.018_bib0002","doi-asserted-by":"crossref","first-page":"S5","DOI":"10.1002\/ppul.25733","article-title":"Increasing life expectancy in cystic fibrosis: advances and challenges","volume":"57","author":"McBennett","year":"2022","journal-title":"Pediatr Pulmonol"},{"key":"10.1016\/j.jcf.2023.10.018_bib0003","series-title":"Patient registry 2021 annual data report","first-page":"92","year":"2022"},{"issue":"2","key":"10.1016\/j.jcf.2023.10.018_bib0004","doi-asserted-by":"crossref","first-page":"262","DOI":"10.1016\/j.jcf.2019.08.009","article-title":"Addressing the burden of illness in adults with cystic fibrosis with screening and triage: an early intervention model of palliative care","volume":"19","author":"Dhingra","year":"2020","journal-title":"J Cyst Fibros"},{"issue":"1","key":"10.1016\/j.jcf.2023.10.018_bib0005","doi-asserted-by":"crossref","first-page":"71","DOI":"10.1016\/j.jcf.2017.02.011","article-title":"The CF-CARES primary palliative care model: a CF-specific structured assessment of symptoms, distress, and coping","volume":"17","author":"Friedman","year":"2018","journal-title":"J Cyst Fibros"},{"issue":"4","key":"10.1016\/j.jcf.2023.10.018_bib0006","doi-asserted-by":"crossref","first-page":"372","DOI":"10.1016\/j.jpainsymman.2007.06.005","article-title":"Self-reported physical and psychological symptom burden in adults with cystic fibrosis","volume":"35","author":"Sawicki","year":"2008","journal-title":"J Pain Symptom Manag"},{"issue":"3","key":"10.1016\/j.jcf.2023.10.018_bib0007","doi-asserted-by":"crossref","first-page":"394","DOI":"10.1016\/j.jcf.2019.11.010","article-title":"Prevalence of unmet palliative care needs in adults with cystic fibrosis","volume":"19","author":"Trandel","year":"2020","journal-title":"J Cyst Fibros"},{"issue":"1","key":"10.1016\/j.jcf.2023.10.018_bib0008","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1089\/jpm.2020.0311","article-title":"Models of palliative care delivery for individuals with cystic fibrosis: Cystic Fibrosis Foundation evidence-informed consensus guidelines","volume":"24","author":"Kavalieratos","year":"2021","journal-title":"J Palliat Med"},{"key":"10.1016\/j.jcf.2023.10.018_bib0009","article-title":"Creating a CF primary palliative care intervention","volume":"55","author":"Dhingra","year":"2020","journal-title":"Pediatr Pulmonol"},{"issue":"8","key":"10.1016\/j.jcf.2023.10.018_bib0010","doi-asserted-by":"crossref","first-page":"1045","DOI":"10.1177\/0269216319854264","article-title":"A brief, patient-and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS)","volume":"33","author":"Murtagh","year":"2019","journal-title":"Palliat Med"},{"issue":"2","key":"10.1016\/j.jcf.2023.10.018_bib0011","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap) \u2013 A metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform"},{"issue":"8","key":"10.1016\/j.jcf.2023.10.018_bib0012","doi-asserted-by":"crossref","first-page":"702","DOI":"10.1177\/1474515120919386","article-title":"Utility of the integrated palliative care outcome scale (IPOS): a cross-sectional study in hospitalised patients with heart failure","volume":"19","author":"Roch","year":"2020","journal-title":"Eur J Cardiovasc Nurs"},{"issue":"3","key":"10.1016\/j.jcf.2023.10.018_bib0013","doi-asserted-by":"crossref","first-page":"257","DOI":"10.1093\/jjco\/hyy203","article-title":"Validation of the integrated palliative care outcome scale (IPOS)\u2013Japanese version","volume":"49","author":"Sakurai","year":"2019","journal-title":"Jpn J Clin Oncol"},{"issue":"5","key":"10.1016\/j.jcf.2023.10.018_bib0014","doi-asserted-by":"crossref","first-page":"886","DOI":"10.1016\/j.jpainsymman.2019.07.012","article-title":"Validation of the French version of the integrated palliative care outcome scale","volume":"58","author":"Sterie","year":"2019","journal-title":"J Pain Sympt Manage"},{"issue":"2","key":"10.1016\/j.jcf.2023.10.018_bib0015","doi-asserted-by":"crossref","first-page":"178","DOI":"10.1016\/j.jpainsymman.2016.04.001","article-title":"A high-touch model of community-based specialist palliative care: latent class analysis identifies distinct patient subgroups","volume":"52","author":"Dhingra","year":"2016","journal-title":"J Pain Sympt Manage"},{"key":"10.1016\/j.jcf.2023.10.018_bib0016","series-title":"Facing cystic fibrosis: a guide for patients and their families","first-page":"183","article-title":"How can my pain be managed?","author":"Bartley","year":"2020"},{"key":"10.1016\/j.jcf.2023.10.018_bib0017","series-title":"A primary palliative care partnership","year":"2021"},{"key":"10.1016\/j.jcf.2023.10.018_bib0019","series-title":"An early intervention palliative care model for cystic fibrosis patients. oral presentation at the cystic fibrosis foundation palliative care workshop","author":"Walker","year":"2016"},{"issue":"6","key":"10.1016\/j.jcf.2023.10.018_bib0020","doi-asserted-by":"crossref","first-page":"1768","DOI":"10.1002\/ppul.26400","article-title":"National integration of mental health screening and treatment into specialized care for cystic fibrosis: What predicts success?","volume":"58","author":"Quittner","year":"2023","journal-title":"Pediatr Pulmonol"},{"issue":"1","key":"10.1016\/j.jcf.2023.10.018_bib0021","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1016\/j.jcf.2022.08.018","article-title":"Non-respiratory health-related quality of life in people with cystic fibrosis receiving elexacaftor\/tezacaftor\/ivacaftor","volume":"22","author":"Fajac","year":"2023","journal-title":"J Cyst Fibros"},{"issue":"6","key":"10.1016\/j.jcf.2023.10.018_bib0022","doi-asserted-by":"crossref","first-page":"837","DOI":"10.1016\/j.jpainsymman.2009.04.029","article-title":"Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis","volume":"38","author":"Stenekes","year":"2009","journal-title":"J Pain Sympt Manage"},{"issue":"4","key":"10.1016\/j.jcf.2023.10.018_bib0023","doi-asserted-by":"crossref","first-page":"2347","DOI":"10.1378\/chest.128.4.2347","article-title":"Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis","volume":"128","author":"Quittner","year":"2005","journal-title":"Chest"},{"key":"10.1016\/j.jcf.2023.10.018_bib0024","doi-asserted-by":"crossref","first-page":"1267","DOI":"10.1007\/s11136-011-0036-z","article-title":"Psychometric evaluation of the Cystic Fibrosis Questionnaire-Revised in a national sample","volume":"21","author":"Quittner","year":"2012","journal-title":"Qual Life Res"},{"issue":"12","key":"10.1016\/j.jcf.2023.10.018_bib0025","doi-asserted-by":"crossref","first-page":"1012","DOI":"10.1089\/jwh.2014.4985","article-title":"Gender differences in outcomes of patients with cystic fibrosis","volume":"23","author":"Harness-Brumley","year":"2014","journal-title":"J Womens Health (Larchmt)"},{"issue":"9","key":"10.1016\/j.jcf.2023.10.018_bib0026","doi-asserted-by":"crossref","first-page":"794","DOI":"10.1093\/oxfordjournals.aje.a009172","article-title":"Gender gap in cystic fibrosis mortality","volume":"145","author":"Rosenfeld","year":"1997","journal-title":"Am J Epidemiol"},{"issue":"6","key":"10.1016\/j.jcf.2023.10.018_bib0027","doi-asserted-by":"crossref","first-page":"637","DOI":"10.1080\/17476348.2022.2090928","article-title":"Socioeconomic determinants of respiratory health in patients with cystic fibrosis: implications for treatment strategies","volume":"16","author":"Oates","year":"2022","journal-title":"Expert Rev Respir Med"},{"issue":"3","key":"10.1016\/j.jcf.2023.10.018_bib0028","doi-asserted-by":"crossref","first-page":"642","DOI":"10.1378\/chest.09-0345","article-title":"Impact of socioeconomic status, race, and ethnicity on quality of life in patients with cystic fibrosis in the United States","volume":"137","author":"Quittner","year":"2010","journal-title":"Chest"},{"key":"10.1016\/j.jcf.2023.10.018_bib0029","first-page":"S1569","article-title":"Center-level self-study identifies opportunities to advance equity in cystic fibrosis clinical trial participation","author":"Januska","year":"2023","journal-title":"J Cyst Fibros"},{"key":"10.1016\/j.jcf.2023.10.018_bib0030","series-title":"E-poster session presented at: European Cystic Fibrosis Conference","author":"Georgiopoulos","year":"2023"}],"container-title":["Journal of Cystic Fibrosis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1569199323016648?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1569199323016648?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T19:07:29Z","timestamp":1783019249000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1569199323016648"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7]]},"references-count":29,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2024,7]]}},"alternative-id":["S1569199323016648"],"URL":"https:\/\/doi.org\/10.1016\/j.jcf.2023.10.018","relation":{},"ISSN":["1569-1993"],"issn-type":[{"value":"1569-1993","type":"print"}],"subject":[],"published":{"date-parts":[[2024,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial","name":"articletitle","label":"Article Title"},{"value":"Journal of Cystic Fibrosis","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jcf.2023.10.018","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2023 European Cystic Fibrosis Society. Published by Elsevier B.V.","name":"copyright","label":"Copyright"}]}}