{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T09:28:46Z","timestamp":1779269326622,"version":"3.51.4"},"reference-count":21,"publisher":"European Respiratory Society (ERS)","issue":"3","license":[{"start":{"date-parts":[[2023,3,23]],"date-time":"2023-03-23T00:00:00Z","timestamp":1679529600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100004325","name":"AstraZeneca","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004325","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["publications.ersnet.org"],"crossmark-restriction":true},"short-container-title":["ERJ Open Res"],"accepted":{"date-parts":[[2023,1,18]]},"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:p>Bronchiectasis is a chronic, progressive lung disease believed to result from a vicious cycle of infection and inflammation, with symptoms of chronic cough with sputum production, chronic fatigue, rhinosinusitis, chest pain, breathlessness and haemoptysis. There are currently no established instruments to monitor daily symptoms and exacerbations for use in clinical trials. Following a literature review and three expert clinician interviews, we conducted concept elicitation interviews with 20 patients with bronchiectasis to understand their personal disease experience. Findings from literature and clinician feedback were used to develop a draft version of the Bronchiectasis Exacerbation Diary (BED), which was designed to monitor key symptoms on a daily basis and during exacerbations. Patients were eligible to be interviewed if they were US residents aged \u226518\u2005years, had a computed tomography scan\u2013confirmed diagnosis of bronchiectasis with \u2265two exacerbations in the previous 2\u2005years and had no other uncontrolled respiratory conditions. Four waves of five patient interviews each were conducted. Patients (n=20) had a mean\u00b1<jats:sub>SD<\/jats:sub>age of 53.9\u00b112.8\u2005years, and most were female (85%) and white (85%). A total of 33 symptoms and 23 impacts arose from the patient concept elicitation interviews. The BED was revised and finalised based upon patient feedback. The final BED is a novel, eight-item patient-reported outcome (PRO) instrument for monitoring key exacerbation symptoms on a daily basis with content validity established through comprehensive qualitative research and direct patient insight. The BED PRO development framework will be completed following psychometric evaluations of the data from a phase 3 bronchiectasis clinical trial.<\/jats:p>","DOI":"10.1183\/23120541.00712-2022","type":"journal-article","created":{"date-parts":[[2023,3,23]],"date-time":"2023-03-23T16:10:23Z","timestamp":1679587823000},"page":"00712-2022","update-policy":"https:\/\/doi.org\/10.1183\/ers-crossmark-policy","source":"Crossref","is-referenced-by-count":7,"title":["The Bronchiectasis Exacerbation Diary: a novel patient-reported outcome for non-cystic fibrosis bronchiectasis"],"prefix":"10.1183","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0853-4210","authenticated-orcid":false,"given":"Vivian H.","family":"Shih","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Jison","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erik","family":"Bark","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Meredith","family":"Venerus","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Oren","family":"Meyers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James D.","family":"Chalmers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"81","published-online":{"date-parts":[[2023,3,23]]},"reference":[{"key":"2024101711514222000_9.3.00712-2022.1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.201203-0487OC"},{"key":"2024101711514222000_9.3.00712-2022.2","doi-asserted-by":"publisher","DOI":"10.1378\/chest.08-0776"},{"key":"2024101711514222000_9.3.00712-2022.3","doi-asserted-by":"crossref","first-page":"982","DOI":"10.1016\/j.chest.2016.10.055","article-title":"Adult patients with bronchiectasis: a first look at the US Bronchiectasis Research Registry","volume":"151","author":"Aksamit","year":"2017","journal-title":"Chest"},{"key":"2024101711514222000_9.3.00712-2022.4","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201507-472OC"},{"key":"2024101711514222000_9.3.00712-2022.5","doi-asserted-by":"crossref","first-page":"642503","DOI":"10.1155\/2015\/642503","article-title":"Neutrophilic bronchial inflammation correlates with clinical and functional findings in patients with noncystic fibrosis bronchiectasis","volume":"2015","author":"Dente","year":"2015","journal-title":"Mediators Inflamm"},{"key":"2024101711514222000_9.3.00712-2022.6","doi-asserted-by":"crossref","first-page":"894","DOI":"10.1164\/rccm.202108-1889OC","article-title":"Characterisation of eosinophilic bronchiectasis: a European multicohort study","volume":"205","author":"Shoemark","year":"2022","journal-title":"Am J Respir Crit Care Med"},{"key":"2024101711514222000_9.3.00712-2022.7","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.00051-2017"},{"key":"2024101711514222000_9.3.00712-2022.8","doi-asserted-by":"crossref","first-page":"i1","DOI":"10.1136\/thx.2010.136119","article-title":"British Thoracic Society guideline for non-CF bronchiectasis","volume":"65: Suppl 1","author":"Pasteur","year":"2010","journal-title":"Thorax"},{"key":"2024101711514222000_9.3.00712-2022.9","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.00629-2017"},{"key":"2024101711514222000_9.3.00712-2022.10","unstructured":"Insmed Incorporated . A study to assess the efficacy, safety, and tolerability of brensocatib in participants with non-cystic fibrosis bronchiectasis (ASPEN). https:\/\/clinicaltrials.gov\/ct2\/show\/NCT04594369 Date last updated: 25 January 2023. Date last accessed: 8 August 2022."},{"key":"2024101711514222000_9.3.00712-2022.11","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2014-205918"},{"key":"2024101711514222000_9.3.00712-2022.12","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01532-2016"},{"key":"2024101711514222000_9.3.00712-2022.13","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.03156-2020"},{"key":"2024101711514222000_9.3.00712-2022.14","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1186\/s12931-019-1272-y","article-title":"Development and initial validation of the bronchiectasis exacerbation and symptom tool (best)","volume":"21","author":"Artaraz","year":"2020","journal-title":"Respir Res"},{"key":"2024101711514222000_9.3.00712-2022.15","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1016\/S2213-2600(18)30053-5","article-title":"Bronchiectasis: new therapies and new perspectives","volume":"6","author":"Chalmers","year":"2018","journal-title":"Lancet Respir Med"},{"key":"2024101711514222000_9.3.00712-2022.16","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-4-79"},{"key":"2024101711514222000_9.3.00712-2022.17","doi-asserted-by":"crossref","first-page":"353","DOI":"10.2147\/PROM.S156279","article-title":"The importance of patient-reported outcomes in clinical trials and strategies for future optimization","volume":"9","author":"Mercieca-Bebber","year":"2018","journal-title":"Patient Relat Outcome Meas"},{"key":"2024101711514222000_9.3.00712-2022.18","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.congress-2018.PA2676"},{"key":"2024101711514222000_9.3.00712-2022.19","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.congress-2018.PA2282"},{"key":"2024101711514222000_9.3.00712-2022.20","doi-asserted-by":"publisher","DOI":"10.1016\/j.rmed.2019.07.016"},{"key":"2024101711514222000_9.3.00712-2022.21","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.01033-2015"}],"container-title":["ERJ Open Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1183\/23120541.00712-2022","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,2,24]],"date-time":"2025-02-24T05:24:31Z","timestamp":1740374671000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.ersnet.org\/lookup\/doi\/10.1183\/23120541.00712-2022"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,3,23]]},"references-count":21,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2023,5,2]]},"published-print":{"date-parts":[[2023,5]]}},"alternative-id":["10.1183\/23120541.00712-2022"],"URL":"https:\/\/doi.org\/10.1183\/23120541.00712-2022","relation":{},"ISSN":["2312-0541"],"issn-type":[{"value":"2312-0541","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,3,23]]}}}