{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,9,16]],"date-time":"2025-09-16T17:21:24Z","timestamp":1758043284430,"version":"3.44.0"},"reference-count":38,"publisher":"Elsevier BV","issue":"1","license":[{"start":{"date-parts":[[2025,3,1]],"date-time":"2025-03-01T00:00:00Z","timestamp":1740787200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2025,3,1]],"date-time":"2025-03-01T00:00:00Z","timestamp":1740787200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2024,8,15]],"date-time":"2024-08-15T00:00:00Z","timestamp":1723680000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","award":["PB-PG-1217-20018"],"award-info":[{"award-number":["PB-PG-1217-20018"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["chestpulmonary.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["CHEST Pulmonary"],"published-print":{"date-parts":[[2025,3]]},"DOI":"10.1016\/j.chpulm.2024.100097","type":"journal-article","created":{"date-parts":[[2024,8,23]],"date-time":"2024-08-23T18:52:15Z","timestamp":1724439135000},"page":"100097","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":0,"title":["Health State Utilities Associated With Treatment Burden in Cystic Fibrosis"],"prefix":"10.1016","volume":"3","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7442-0935","authenticated-orcid":false,"given":"Rory A.","family":"Cameron","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessie","family":"Matthews","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daniel","family":"Office","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mark","family":"Rowley","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Janice","family":"Abbott","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1705-4780","authenticated-orcid":false,"given":"Nicholas J.","family":"Simmonds","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5886-1933","authenticated-orcid":false,"given":"Jennifer A.","family":"Whitty","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0580-2478","authenticated-orcid":false,"given":"Siobh\u00e1n B.","family":"Carr","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"issue":"1","key":"10.1016\/j.chpulm.2024.100097_bib1","doi-asserted-by":"crossref","first-page":"65","DOI":"10.1016\/S2213-2600(19)30337-6","article-title":"The future of cystic fibrosis care: a global perspective","volume":"8","author":"Bell","year":"2020","journal-title":"Lancet Respir Med"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib2","doi-asserted-by":"crossref","first-page":"1021","DOI":"10.3390\/jcm11041021","article-title":"Elexacaftor\/tezacaftor\/ivacaftor in patients with cystic fibrosis homozygous for the F508del mutation and advanced lung disease: a 48-week observational study","volume":"11","author":"Carnovale","year":"2022","journal-title":"J Clin Med"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib3","doi-asserted-by":"crossref","first-page":"1178","DOI":"10.1002\/ppul.26318","article-title":"Clinical change 2 years from start of elexacaftor-tezacaftor-ivacaftor in severe cystic fibrosis","volume":"58","author":"McCoy","year":"2023","journal-title":"Pediatr Pulmonol"},{"key":"10.1016\/j.chpulm.2024.100097_bib4","doi-asserted-by":"crossref","DOI":"10.1016\/j.rmed.2022.106878","article-title":"Who are the 10%? - non eligibility of cystic fibrosis (CF) patients for highly effective modulator therapies","volume":"199","author":"Desai","year":"2022","journal-title":"Respir Med"},{"issue":"8","key":"10.1016\/j.chpulm.2024.100097_bib5","doi-asserted-by":"crossref","first-page":"840","DOI":"10.1136\/thorax-2023-220100","article-title":"A refresh of the top 10 research priorities in cystic fibrosis","volume":"78","author":"Rowbotham","year":"2023","journal-title":"Thorax"},{"issue":"suppl 1","key":"10.1016\/j.chpulm.2024.100097_bib6","doi-asserted-by":"crossref","first-page":"S23","DOI":"10.1016\/j.jcf.2014.03.010","article-title":"European Cystic Fibrosis Society standards of care: best practice guidelines","volume":"13","author":"Smyth","year":"2014","journal-title":"J\u00a0Cyst Fibros"},{"issue":"1","key":"10.1016\/j.chpulm.2024.100097_bib7","doi-asserted-by":"crossref","first-page":"54","DOI":"10.1016\/j.jcf.2010.10.003","article-title":"Safety, efficacy and convenience of tobramycin inhalation powder in cystic fibrosis patients: The EAGER trial","volume":"10","author":"Konstan","year":"2011","journal-title":"J\u00a0Cyst Fibros"},{"issue":"5","key":"10.1016\/j.chpulm.2024.100097_bib8","doi-asserted-by":"crossref","first-page":"461","DOI":"10.1136\/thoraxjnl-2021-217594","article-title":"Self-management intervention to reduce pulmonary exacerbations by supporting treatment adherence in adults with cystic fibrosis: a randomised controlled trial","volume":"77","author":"Wildman","year":"2022","journal-title":"Thorax"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib9","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":"2022","journal-title":"Lancet Respir Med"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib10","doi-asserted-by":"crossref","first-page":"567","DOI":"10.1016\/j.jval.2022.12.002","article-title":"Development of the Cystic Fibrosis Questionnaire-Revised-8 dimensions: estimating utilities from the Cystic Fibrosis Questionnaire-Revised","volume":"26","author":"Acaster","year":"2023","journal-title":"Value Health"},{"key":"10.1016\/j.chpulm.2024.100097_bib11","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1186\/s12955-015-0224-6","article-title":"Mapping the EQ-5D index from the cystic fibrosis questionnaire-revised using multiple modelling approaches","volume":"13","author":"Acaster","year":"2015","journal-title":"Health Qual Life Outcomes"},{"year":"2017","author":"Brazier","series-title":"Measuring and Valuing Health Benefits for Economic Evaluation","key":"10.1016\/j.chpulm.2024.100097_bib12"},{"year":"2015","author":"Drummond","series-title":"Methods for the Economic Evaluation of Health Care Programmes","key":"10.1016\/j.chpulm.2024.100097_bib13"},{"key":"10.1016\/j.chpulm.2024.100097_bib14","article-title":"Evidence-based valuation of patient-centred outcomes in Cystic Fibrosis","author":"Carr","year":"2019","journal-title":"National Institute for Health Research (NIHR)"},{"issue":"2","key":"10.1016\/j.chpulm.2024.100097_bib15","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1002\/(SICI)1099-1050(199603)5:2<141::AID-HEC189>3.0.CO;2-N","article-title":"The time trade-off method: results from a general population study","volume":"5","author":"Dolan","year":"1996","journal-title":"Health Econ"},{"issue":"6","key":"10.1016\/j.chpulm.2024.100097_bib16","doi-asserted-by":"crossref","first-page":"812","DOI":"10.1016\/j.jval.2020.12.017","article-title":"Vignette-based utilities: usefulness, limitations, and methodological recommendations","volume":"24","author":"Matza","year":"2021","journal-title":"Value Health"},{"issue":"6","key":"10.1016\/j.chpulm.2024.100097_bib17","doi-asserted-by":"crossref","first-page":"1241","DOI":"10.1016\/j.chest.2022.07.008","article-title":"Treatment preference among people with cystic fibrosis: the importance of reducing treatment burden","volume":"162","author":"Cameron","year":"2022","journal-title":"Chest"},{"key":"10.1016\/j.chpulm.2024.100097_bib18","first-page":"101137","article-title":"Evaluating the correspondence between the EQ-5D-5L and disease severity and quality of life in adults and adolescents with cystic fibrosis","volume":"86","author":"Altabee","year":"2024","journal-title":"Respir Med Res"},{"year":"2020","author":"Charman","series-title":"UK Cystic Fibrosis Registry Annual Data Report 2019","key":"10.1016\/j.chpulm.2024.100097_bib19"},{"issue":"1","key":"10.1016\/j.chpulm.2024.100097_bib20","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1016\/j.jval.2018.05.010","article-title":"Overview, update, and lessons learned from the international EQ-5D-5L valuation work: version 2 of the EQ-5D-5L valuation protocol","volume":"22","author":"Stolk","year":"2019","journal-title":"Value Health"},{"issue":"7","key":"10.1016\/j.chpulm.2024.100097_bib21","doi-asserted-by":"crossref","first-page":"529","DOI":"10.1002\/hec.741","article-title":"Logical inconsistencies in survey respondents' health state valuations - a methodological challenge for estimating social tariffs","volume":"12","author":"Devlin","year":"2003","journal-title":"Health Econ"},{"issue":"9","key":"10.1016\/j.chpulm.2024.100097_bib22","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0184883","article-title":"Logical inconsistencies in time trade-off valuation of EQ-5D-5L health states: Whose fault is it?","volume":"12","author":"Yang","year":"2017","journal-title":"PLoS One"},{"issue":"5","key":"10.1016\/j.chpulm.2024.100097_bib23","doi-asserted-by":"crossref","first-page":"708","DOI":"10.1016\/j.jval.2012.02.008","article-title":"Interim scoring for the EQ-5D-5L: mapping the EQ-5D-5L to EQ-5D-3L value sets","volume":"15","author":"van Hout","year":"2012","journal-title":"Value Health"},{"year":"2021","author":"Shaikh","series-title":"UK Cystic Fibrosis Registry Annual Data Report 2020","key":"10.1016\/j.chpulm.2024.100097_bib24"},{"issue":"Suppl 1","key":"10.1016\/j.chpulm.2024.100097_bib25","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1007\/s10198-016-0781-6","article-title":"Social\/economic costs and health-related quality of life in patients with cystic fibrosis in Europe","volume":"17","author":"Chevreul","year":"2016","journal-title":"Eur J Health Econ"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib26","doi-asserted-by":"crossref","first-page":"644","DOI":"10.1016\/j.jval.2016.11.015","article-title":"Instrument-defined estimates of the minimally important difference for EQ-5D-5L Index scores","volume":"20","author":"McClure","year":"2017","journal-title":"Value Health"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib27","first-page":"174","article-title":"Patient preference for treatment administration in cystic fibrosis","volume":"7","author":"Sawicki","year":"2015","journal-title":"Am J Pharm Benefits"},{"issue":"2","key":"10.1016\/j.chpulm.2024.100097_bib28","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1016\/j.jcf.2018.08.001","article-title":"Correspondence between symptoms and preference-based health status measures in the STOP study","volume":"18","author":"Gold","year":"2019","journal-title":"J\u00a0Cyst Fibros"},{"issue":"9","key":"10.1016\/j.chpulm.2024.100097_bib29","doi-asserted-by":"crossref","first-page":"1207","DOI":"10.1007\/s10198-018-0975-1","article-title":"What should we know about the person behind a TTO?","volume":"19","author":"van Nooten","year":"2018","journal-title":"Eur J Health Econ"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib30","doi-asserted-by":"crossref","first-page":"1199","DOI":"10.1007\/s11136-021-03026-6","article-title":"Time trade-off with someone to live for: impact of having significant others on time trade-off valuations of hypothetical health states","volume":"31","author":"Hansen","year":"2022","journal-title":"Qual Life Res"},{"issue":"5","key":"10.1016\/j.chpulm.2024.100097_bib31","doi-asserted-by":"crossref","first-page":"1433","DOI":"10.1007\/s11136-020-02712-1","article-title":"Comparison of online and face-to-face valuation of the EQ-5D-5L using composite time trade-off","volume":"30","author":"Jiang","year":"2021","journal-title":"Qual Life Res"},{"issue":"7","key":"10.1016\/j.chpulm.2024.100097_bib32","doi-asserted-by":"crossref","first-page":"943","DOI":"10.1016\/S0277-9536(99)00182-3","article-title":"Inconsistent responses in three preference-elicitation methods for health states","volume":"49","author":"Badia","year":"1999","journal-title":"Soc Sci Med"},{"issue":"2","key":"10.1016\/j.chpulm.2024.100097_bib33","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1177\/0272989X06286480","article-title":"Inconsistencies in TTO and VAS values for EQ-5D health states","volume":"26","author":"Lamers","year":"2006","journal-title":"Med Decis Making"},{"issue":"1","key":"10.1016\/j.chpulm.2024.100097_bib34","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1007\/s10198-013-0508-x","article-title":"Time trade-off: one methodology, different methods","volume":"14","author":"Attema","year":"2013","journal-title":"Eur J Health Econ"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib35","doi-asserted-by":"crossref","first-page":"331","DOI":"10.1080\/14737167.2020.1779062","article-title":"An overview of the time trade-off method: concept, foundation, and the evaluation of distorting factors in putting a value on health","volume":"20","author":"Lugn\u00e9r","year":"2020","journal-title":"Expert Rev Pharmacoecon Outcomes Res"},{"issue":"4","key":"10.1016\/j.chpulm.2024.100097_bib36","doi-asserted-by":"crossref","first-page":"201","DOI":"10.2165\/00148365-200504040-00002","article-title":"Should patients have a greater role in valuing health states?","volume":"4","author":"Brazier","year":"2005","journal-title":"Appl Health Econ Health Policy"},{"issue":"1","key":"10.1016\/j.chpulm.2024.100097_bib37","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1007\/s41669-019-0144-1","article-title":"Health state utility data in cystic fibrosis: a systematic review","volume":"4","author":"Mohindru","year":"2020","journal-title":"Pharmacoecon Open"},{"issue":"3","key":"10.1016\/j.chpulm.2024.100097_bib38","doi-asserted-by":"crossref","first-page":"267","DOI":"10.1016\/j.jval.2019.01.004","article-title":"Identification, review, and use of health state utilities in cost-effectiveness models: An ISPOR Good Practices for Outcomes Research Task Force Report","volume":"22","author":"Brazier","year":"2019","journal-title":"Value Health"}],"container-title":["CHEST Pulmonary"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2949789224000631?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2949789224000631?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,9,12]],"date-time":"2025-09-12T04:18:35Z","timestamp":1757650715000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S2949789224000631"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,3]]},"references-count":38,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025,3]]}},"alternative-id":["S2949789224000631"],"URL":"https:\/\/doi.org\/10.1016\/j.chpulm.2024.100097","relation":{},"ISSN":["2949-7892"],"issn-type":[{"type":"print","value":"2949-7892"}],"subject":[],"published":{"date-parts":[[2025,3]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Health State Utilities Associated With Treatment Burden in Cystic Fibrosis","name":"articletitle","label":"Article Title"},{"value":"CHEST Pulmonary","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.chpulm.2024.100097","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2024 The Authors. Published by Elsevier Inc under license from the American College of Chest Physicians.","name":"copyright","label":"Copyright"}],"article-number":"100097"}}