{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T02:38:21Z","timestamp":1792723101721,"version":"4.5.0"},"reference-count":29,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Paediatric Respiratory Reviews"],"published-print":{"date-parts":[[2026,10]]},"DOI":"10.1016\/j.prrv.2026.09.010","type":"journal-article","created":{"date-parts":[[2026,10,3]],"date-time":"2026-10-03T22:32:50Z","timestamp":1791066770000},"update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":0,"title":["Paediatric palliative care in advanced cystic fibrosis: from prognosis-based to needs-based care across the disease trajectory"],"prefix":"10.1016","author":[{"given":"Beatriz","family":"Rodrigues-Tiago","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4497-0696","authenticated-orcid":false,"given":"Cristiana","family":"Rol\u00e3o-Carvalho","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4665-585X","authenticated-orcid":false,"given":"Paulo","family":"Reis-Pina","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.prrv.2026.09.010_b0005","doi-asserted-by":"crossref","DOI":"10.1177\/17534666241297877","article-title":"Modulator-refractory cystic fibrosis: defining the scope and challenges of an emerging at-risk population","author":"Somerville","year":"2024","journal-title":"Ther Adv Respir Dis"},{"issue":"1","key":"10.1016\/j.prrv.2026.09.010_b0010","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1016\/j.jcf.2023.12.002","article-title":"Standards for the care of people with cystic fibrosis; establishing and maintaining health","volume":"23","author":"Southern","year":"2024","journal-title":"J Cyst Fibros"},{"issue":"2","key":"10.1016\/j.prrv.2026.09.010_b0015","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1016\/j.jcf.2018.02.006","article-title":"ECFS best practice guidelines: the 2018 revision","volume":"17","author":"Castellani","year":"2018","journal-title":"J Cyst Fibros"},{"issue":"3","key":"10.1016\/j.prrv.2026.09.010_b0020","doi-asserted-by":"crossref","first-page":"375","DOI":"10.1016\/j.jcf.2024.05.007","article-title":"Standards for the care of people with cystic fibrosis (CF); planning for a longer life","volume":"23","author":"Gramegna","year":"2024","journal-title":"J Cyst Fibros"},{"issue":"56 Suppl 1","key":"10.1016\/j.prrv.2026.09.010_b0025","first-page":"S69","article-title":"Enhancing care for individuals with advanced cystic fibrosis lung disease","volume":"12","author":"Kapnadak","year":"2021","journal-title":"Pediatr Pulmonol"},{"issue":"6","key":"10.1016\/j.prrv.2026.09.010_b0030","doi-asserted-by":"crossref","first-page":"1045","DOI":"10.1016\/j.jcf.2024.09.011","article-title":"Cystic fibrosis foundation position paper: redefining the cystic fibrosis care team","volume":"23","author":"Brown","year":"2024","journal-title":"J Cyst Fibros"},{"issue":"11","key":"10.1016\/j.prrv.2026.09.010_b0035","doi-asserted-by":"crossref","first-page":"1349","DOI":"10.1016\/j.healun.2021.07.005","article-title":"Consensus document for the selection of lung transplant candidates: an update from the International Society for Heart and Lung Transplantation","volume":"40","author":"Leard","year":"2021","journal-title":"J Heart Lung Transplant"},{"issue":"S48","key":"10.1016\/j.prrv.2026.09.010_b0040","doi-asserted-by":"crossref","first-page":"S61","DOI":"10.1002\/ppul.23748","article-title":"Paediatric lung transplantation and end of life care in cystic fibrosis: barriers and successful strategies","volume":"52","author":"Dellon","year":"2017","journal-title":"Pediatr Pulmonol"},{"issue":"6","key":"10.1016\/j.prrv.2026.09.010_b0045","doi-asserted-by":"crossref","first-page":"829","DOI":"10.1016\/j.jpainsymman.2010.03.024","article-title":"Family caregiver perspectives on symptoms and treatments for patients dying from complications of cystic fibrosis","volume":"40","author":"Dellon","year":"2010","journal-title":"J Pain Symptom Manage"},{"issue":"2","key":"10.1016\/j.prrv.2026.09.010_b0050","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1016\/j.jcf.2024.01.005","article-title":"Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues","volume":"23","author":"Burgel","year":"2024","journal-title":"J Cyst Fibros"},{"issue":"1","key":"10.1016\/j.prrv.2026.09.010_b0055","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"},{"issue":"11","key":"10.1016\/j.prrv.2026.09.010_b0060","doi-asserted-by":"crossref","first-page":"1650","DOI":"10.1089\/jpm.2020.0725","article-title":"Assessing practices, beliefs, and attitudes about palliative care among people with cystic fibrosis, their caregivers, and clinicians: results of a content analysis","volume":"24","author":"Basile","year":"2021","journal-title":"J Palliat Med"},{"issue":"6","key":"10.1016\/j.prrv.2026.09.010_b0065","doi-asserted-by":"crossref","first-page":"396","DOI":"10.1016\/j.jcf.2007.03.005","article-title":"Effects of lung transplantation on inpatient end of life care in cystic fibrosis","volume":"6","author":"Dellon","year":"2007","journal-title":"J Cyst Fibros"},{"issue":"2","key":"10.1016\/j.prrv.2026.09.010_b0070","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1136\/archdischild-2012-303027","article-title":"Deaths in childhood from cystic fibrosis: 10-Year analysis from two London specialist centres","volume":"98","author":"Urquhart","year":"2013","journal-title":"Arch Dis Child"},{"issue":"7","key":"10.1016\/j.prrv.2026.09.010_b0075","doi-asserted-by":"crossref","first-page":"1056","DOI":"10.1016\/j.socscimed.2009.07.007","article-title":"\u201cA bed in the middle of nowhere\u201d: Parents\u2019 meanings of place of death for adults with cystic fibrosis","volume":"69","author":"Lowton","year":"2009","journal-title":"Soc Sci Med"},{"issue":"5","key":"10.1016\/j.prrv.2026.09.010_b0080","doi-asserted-by":"crossref","first-page":"230","DOI":"10.1179\/1743291X11Y.0000000005","article-title":"A symptom-based approach to palliative care in cystic fibrosis","volume":"19","author":"Robinson","year":"2011","journal-title":"Prog Palliat Care"},{"issue":"3","key":"10.1016\/j.prrv.2026.09.010_b0085","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1016\/j.jcf.2020.02.015","article-title":"Cystic Fibrosis Foundation consensus guidelines for the care of individuals with advanced cystic fibrosis lung disease","volume":"19","author":"Kapnadak","year":"2020","journal-title":"J Cyst Fibros"},{"key":"10.1016\/j.prrv.2026.09.010_b0090","doi-asserted-by":"crossref","DOI":"10.1016\/j.rmed.2023.107411","article-title":"Palliative care interventions in chronic respiratory diseases: a systematic review","volume":"219","author":"Santos","year":"2023","journal-title":"Respir Med"},{"issue":"5","key":"10.1016\/j.prrv.2026.09.010_b0095","doi-asserted-by":"crossref","first-page":"658","DOI":"10.1007\/s11864-022-00957-1","article-title":"Family meetings in palliative care: benefits and barriers","volume":"23","author":"Glajchen","year":"2022","journal-title":"Curr Treat Options Oncol"},{"issue":"8","key":"10.1016\/j.prrv.2026.09.010_b0100","doi-asserted-by":"crossref","first-page":"1620","DOI":"10.3390\/life13081620","article-title":"Addressing symptom burden and palliative care needs in cystic fibrosis: a narrative review of the literature","volume":"13","author":"DiFiglia","year":"2023","journal-title":"Life"},{"issue":"14","key":"10.1016\/j.prrv.2026.09.010_b0105","doi-asserted-by":"crossref","first-page":"3341","DOI":"10.1002\/cncr.32879","article-title":"Symptom burden trajectories experienced by patients with brain tumors","volume":"126","author":"Lai","year":"2020","journal-title":"Cancer"},{"issue":"3","key":"10.1016\/j.prrv.2026.09.010_b0110","doi-asserted-by":"crossref","first-page":"157","DOI":"10.21037\/apm.2016.04.03","article-title":"Child\u2019s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of paediatric palliative care","volume":"5","author":"Olagunju","year":"2016","journal-title":"Ann. Palliat. Med."},{"issue":"1","key":"10.1016\/j.prrv.2026.09.010_b0115","doi-asserted-by":"crossref","DOI":"10.1016\/j.xkme.2025.101168","article-title":"Symptom burden and patient-reported outcomes in kidney transplant recipients: results from the transplantlines biobank and cohort studies","volume":"8","author":"Riemersma","year":"2026","journal-title":"Kidney Med"},{"key":"10.1016\/j.prrv.2026.09.010_b0120","doi-asserted-by":"crossref","first-page":"1205","DOI":"10.2147\/PRBM.S454787","article-title":"The heterogeneity of symptom burden and fear of progression among kidney transplant recipients: a latent class analysis","volume":"17","author":"Zhang","year":"2024","journal-title":"Psychol Res Behav Manag"},{"issue":"5","key":"10.1016\/j.prrv.2026.09.010_b0125","doi-asserted-by":"crossref","first-page":"664","DOI":"10.3390\/children9050664","article-title":"Documentation of psychosocial distress and its antecedents in children with rare or life-limiting chronic conditions","volume":"9","author":"McCarthy","year":"2022","journal-title":"Children"},{"issue":"1","key":"10.1016\/j.prrv.2026.09.010_b0130","doi-asserted-by":"crossref","first-page":"96","DOI":"10.1016\/j.jcf.2015.08.004","article-title":"Advance care planning in cystic fibrosis: current practices, challenges, and opportunities","volume":"15","author":"Dellon","year":"2016","journal-title":"J Cyst Fibros"},{"issue":"3","key":"10.1016\/j.prrv.2026.09.010_b0135","doi-asserted-by":"crossref","first-page":"318","DOI":"10.1053\/j.ajkd.2023.07.018","article-title":"Advance care planning and palliative care consultation in kidney transplantation","volume":"83","author":"Fisher","year":"2024","journal-title":"Am J Kidney Dis"},{"issue":"8","key":"10.1016\/j.prrv.2026.09.010_b0140","doi-asserted-by":"crossref","first-page":"1508","DOI":"10.1093\/geronb\/gbac003","article-title":"Racial and ethnic disparities in advance care planning: assessing the role of subjective life expectancy","volume":"77","author":"Lou","year":"2022","journal-title":"J Gerontol B Psychol Sci Soc Sci"},{"issue":"7","key":"10.1016\/j.prrv.2026.09.010_b0145","doi-asserted-by":"crossref","first-page":"2315","DOI":"10.1111\/ajt.16035","article-title":"Bringing palliative care to transplant","volume":"21","author":"Pullen","year":"2021","journal-title":"Am J Transplant"}],"container-title":["Paediatric Respiratory Reviews"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1526054226000849?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1526054226000849?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T01:54:33Z","timestamp":1792720473000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1526054226000849"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10]]},"references-count":29,"alternative-id":["S1526054226000849"],"URL":"https:\/\/doi.org\/10.1016\/j.prrv.2026.09.010","relation":{},"ISSN":["1526-0542"],"issn-type":[{"value":"1526-0542","type":"print"}],"subject":[],"published":{"date-parts":[[2026,10]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Paediatric palliative care in advanced cystic fibrosis: from prognosis-based to needs-based care across the disease trajectory","name":"articletitle","label":"Article Title"},{"value":"Paediatric Respiratory Reviews","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.prrv.2026.09.010","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2026 The Author(s). Published by Elsevier Ltd.","name":"copyright","label":"Copyright"}]}}