{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T21:28:07Z","timestamp":1790803687794,"version":"4.1.0"},"reference-count":26,"publisher":"Elsevier BV","issue":"6","license":[{"start":{"date-parts":[[2025,11,1]],"date-time":"2025-11-01T00:00:00Z","timestamp":1761955200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,11,1]],"date-time":"2025-11-01T00:00:00Z","timestamp":1761955200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"DOI":"10.13039\/100000897","name":"Cystic Fibrosis Foundation","doi-asserted-by":"publisher","award":["QUEST20PE0"],"award-info":[{"award-number":["QUEST20PE0"]}],"id":[{"id":"10.13039\/100000897","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000897","name":"Cystic Fibrosis Foundation","doi-asserted-by":"publisher","award":["SAWICK14PE1"],"award-info":[{"award-number":["SAWICK14PE1"]}],"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":[[2025,11]]},"DOI":"10.1016\/j.jcf.2025.07.014","type":"journal-article","created":{"date-parts":[[2025,8,25]],"date-time":"2025-08-25T17:08:16Z","timestamp":1756141696000},"page":"1130-1140","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":5,"title":["\u201cTime out for an hour, every day, my whole life\u201d: understanding treatment burden in cystic fibrosis in the era of Elexacaftor\/Tezacaftor\/Ivacaftor (ETI)"],"prefix":"10.1016","volume":"24","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4991-5167","authenticated-orcid":false,"given":"Jennifer L.","family":"Butcher","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Siracusa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Grabowski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dana","family":"Yablon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7988-6593","authenticated-orcid":false,"given":"Benjamin","family":"Ertman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"McWilliams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tia","family":"Woo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6771-5436","authenticated-orcid":false,"given":"Robin S.","family":"Everhart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jill","family":"Maggs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1119-0079","authenticated-orcid":false,"given":"Michelle","family":"Prickett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6404-3793","authenticated-orcid":false,"given":"Alex H","family":"Gifford","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Mayer-Hamblett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David P","family":"Nichols","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6892-3512","authenticated-orcid":false,"given":"Kristin A.","family":"Riekert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gregory S.","family":"Sawicki","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.jcf.2025.07.014_bib0001","doi-asserted-by":"crossref","first-page":"S265","DOI":"10.1016\/S1569-1993(23)01428-5","article-title":"Perceptions of treatment burden for people with cystic fibrosis on highly effective modulator therapy following a withdrawal study","volume":"22","author":"Butcher","year":"2023","journal-title":"J Cys Fib"},{"key":"10.1016\/j.jcf.2025.07.014_bib0002","series-title":"James lind alliance priority setting partnerships","article-title":"Cystic Fibrosis Top 10","author":"Alliance","year":"2017"},{"issue":"1","key":"10.1016\/j.jcf.2025.07.014_bib0003","doi-asserted-by":"crossref","first-page":"142","DOI":"10.1378\/chest.13-1926","article-title":"Pulmonary medication adherence and health-care use in cystic fibrosis","volume":"146","author":"Quittner","year":"2014","journal-title":"Chest"},{"issue":"3","key":"10.1016\/j.jcf.2025.07.014_bib0004","doi-asserted-by":"crossref","first-page":"499","DOI":"10.1016\/j.jcf.2019.10.025","article-title":"Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials","volume":"19","author":"Davies","year":"2020","journal-title":"J Cystic Fibrosis"},{"issue":"1","key":"10.1016\/j.jcf.2025.07.014_bib0005","doi-asserted-by":"crossref","first-page":"84","DOI":"10.1186\/s12967-017-1193-9","article-title":"Cystic fibrosis: current therapeutic targets and future approaches","volume":"15","author":"Rafeeq","year":"2017","journal-title":"J Transl Med"},{"issue":"2","key":"10.1016\/j.jcf.2025.07.014_bib0006","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1097\/MCP.0000000000000244","article-title":"The psychological burden of cystic fibrosis","volume":"22","author":"Quittner","year":"2016","journal-title":"Curr Opin Pulm Med"},{"key":"10.1016\/j.jcf.2025.07.014_bib0007","doi-asserted-by":"crossref","DOI":"10.1016\/j.jpsychores.2021.110607","article-title":"Social support and social isolation in adults with cystic fibrosis: an integrative review","volume":"150","author":"Gulledge","year":"2021","journal-title":"J Psychosom Res"},{"issue":"3","key":"10.1016\/j.jcf.2025.07.014_bib0008","doi-asserted-by":"crossref","first-page":"495","DOI":"10.1016\/j.ccm.2014.06.005","article-title":"Cystic fibrosis and sleep","volume":"35","author":"Katz","year":"2014","journal-title":"Clin. Chest Med."},{"issue":"Suppl 40","key":"10.1016\/j.jcf.2025.07.014_bib0009","first-page":"S74","article-title":"Tackling the increasing complexity of CF care","volume":"50","author":"Sawicki","year":"2015","journal-title":"Pediatr. Pulmonol."},{"key":"10.1016\/j.jcf.2025.07.014_bib0010","doi-asserted-by":"crossref","first-page":"677","DOI":"10.1016\/j.ccm.2022.06.009","article-title":"Update on clinical outcomes of highly effective modulator therapy","volume":"43","author":"Gifford","year":"2022","journal-title":"Clin. Chest Med."},{"issue":"6","key":"10.1016\/j.jcf.2025.07.014_bib0011","doi-asserted-by":"crossref","first-page":"580","DOI":"10.1097\/MCP.0000000000001006","article-title":"Chronic daily respiratory care needs in people with cystic fibrosis treated with highly effective cystic fibrosis transmembrane conductance regulator modulators","volume":"29","author":"Wajda","year":"2023","journal-title":"Curr Opin Pulm Med"},{"issue":"4","key":"10.1016\/j.jcf.2025.07.014_bib0012","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1016\/S2213-2600(22)00434-9","article-title":"Discontinuation versus continuation of hypertonic saline or dornase alfa in modulator treated people with cystic fibrosis (SIMPLIFY): results from two parallel, multicentre, open-label, randomised, controlled, non-inferiority trials","volume":"11","author":"Mayer-Hamblett","year":"2023","journal-title":"Lancet Respirat Med"},{"issue":"4","key":"10.1016\/j.jcf.2025.07.014_bib0013","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2023-062985","article-title":"Delivering a new future for people with cystic fibrosis","volume":"152","author":"Burgener","year":"2023","journal-title":"Pediatrics"},{"issue":"8","key":"10.1016\/j.jcf.2025.07.014_bib0014","doi-asserted-by":"crossref","first-page":"2340","DOI":"10.1002\/ppul.26494","article-title":"Parent and adolescent perceptions of cystic fibrosis management responsibility: a mixed-methods study","volume":"58","author":"South","year":"2023","journal-title":"Pediatr. Pulmonol."},{"issue":"1","key":"10.1016\/j.jcf.2025.07.014_bib0015","doi-asserted-by":"crossref","first-page":"693","DOI":"10.1038\/s41467-023-36244-2","article-title":"Future therapies for cystic fibrosis","volume":"14","author":"Allen","year":"2023","journal-title":"Nat Commun"},{"key":"10.1016\/j.jcf.2025.07.014_bib0016","doi-asserted-by":"crossref","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"issue":"5","key":"10.1016\/j.jcf.2025.07.014_bib0017","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0232076","article-title":"A simple method to assess and report thematic saturation in qualitative research","volume":"15","author":"Guest","year":"2020","journal-title":"PLoS One"},{"issue":"5","key":"10.1016\/j.jcf.2025.07.014_bib0018","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2016-2569","article-title":"Modifiable resilience factors to childhood adversity for clinical pediatric practice","volume":"139","author":"Traub","year":"2017","journal-title":"Pediatrics"},{"issue":"5","key":"10.1016\/j.jcf.2025.07.014_bib0019","doi-asserted-by":"crossref","first-page":"552","DOI":"10.1093\/jpepsy\/jsx145","article-title":"Grit, illness-related distress, and psychosocial outcomes in college students with a chronic medical condition: a path analysis","volume":"43","author":"Sharkey","year":"2018","journal-title":"J Pediatr Psychol"},{"issue":"1","key":"10.1016\/j.jcf.2025.07.014_bib0020","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1111\/jcpp.12306","article-title":"Practitioner Review: diagnosing childhood resilience\u2014A systemic approach to the diagnosis of adaptation in adverse social and physical ecologies","volume":"56","author":"Ungar","year":"2015","journal-title":"J Child Psychol Psychiatry"},{"issue":"7","key":"10.1016\/j.jcf.2025.07.014_bib0021","doi-asserted-by":"crossref","first-page":"1992","DOI":"10.1002\/ppul.25361","article-title":"Assessment of treatment burden and complexity in cystic fibrosis: a quality improvement project","volume":"56","author":"Hente","year":"2021","journal-title":"Pediatr. Pulmonol."},{"key":"10.1016\/j.jcf.2025.07.014_bib0022","doi-asserted-by":"crossref","DOI":"10.1016\/j.jcf.2017.10.015","article-title":"Development and electronic validation of the revised Cystic Fibrosis Questionnaire (CFQ-R Teen\/Adult): new tool for monitoring psychosocial health in CF","volume":"17","author":"Sol\u00e9","year":"2018","journal-title":"J Cystic Fibrosis"},{"key":"10.1016\/j.jcf.2025.07.014_bib0023","doi-asserted-by":"crossref","DOI":"10.1016\/j.jcf.2007.06.003","article-title":"Validation of the Italian version of the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), a disease-specific measure for adults and adolescents with cystic fibrosis","volume":"7","author":"Monti","year":"2008","journal-title":"J Cystic Fibrosis"},{"issue":"2","key":"10.1016\/j.jcf.2025.07.014_bib0024","doi-asserted-by":"crossref","first-page":"326","DOI":"10.1016\/j.jcf.2024.10.011","article-title":"Success with Therapies Research Consortium Barriers Study Investigators. Supporting adherence to the cystic fibrosis regimen: Development and validation of The Daily Care Check-In (DCC)","volume":"24","author":"Riekert","year":"2025","journal-title":"J Cyst Fibros"},{"issue":"2","key":"10.1016\/j.jcf.2025.07.014_bib0025","doi-asserted-by":"crossref","first-page":"S179","DOI":"10.1016\/S1569-1993(22)00994-8","article-title":"Using network learning models to facilitate best practices for successful conversations prompted from the daily care check-in","volume":"21","author":"Siracusa","year":"2022","journal-title":"J Cystic Fibrosis"},{"key":"10.1016\/j.jcf.2025.07.014_bib0026","article-title":"Wellness in the modulator era: an observational study of the impact of CFTR modulator therapy on the well-being of people with cystic fibrosis","volume":"25","author":"Van Citters","year":"2024","journal-title":"J Cystic Fibrosis"}],"container-title":["Journal of Cystic Fibrosis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1569199325015395?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1569199325015395?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,5,28]],"date-time":"2026-05-28T07:36:00Z","timestamp":1779953760000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1569199325015395"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11]]},"references-count":26,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2025,11]]}},"alternative-id":["S1569199325015395"],"URL":"https:\/\/doi.org\/10.1016\/j.jcf.2025.07.014","relation":{},"ISSN":["1569-1993"],"issn-type":[{"value":"1569-1993","type":"print"}],"subject":[],"published":{"date-parts":[[2025,11]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"\u201cTime out for an hour, every day, my whole life\u201d: understanding treatment burden in cystic fibrosis in the era of Elexacaftor\/Tezacaftor\/Ivacaftor (ETI)","name":"articletitle","label":"Article Title"},{"value":"Journal of Cystic Fibrosis","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jcf.2025.07.014","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2025 Published by Elsevier B.V. on behalf of European Cystic Fibrosis Society.","name":"copyright","label":"Copyright"}]}}