@article{c7b6738b42c04cca8549a12c1aaf52ca,
title = "US Patient-Centered Research Priorities and Roadmap for Bronchiectasis",
abstract = "Noncystic fibrosis bronchiectasis (bronchiectasis) is an increasingly common chronic lung disease that is difficult to manage because of a lack of evidence on which to base treatment decision-making. We sought to develop a practical list of US-based patient-centered research priorities and an associated roadmap to guide bronchiectasis research. We designed and administered a web-based patient needs assessment survey to establish broad research priorities, convened three stakeholder webinars to confirm the top priorities, obtained written stakeholder feedback, and completed a final consensus survey of objectives. The stakeholder panel consisted of clinical research experts in bronchiectasis, a seven-member patient advisory panel, and representatives from the two key patient advocacy organizations: COPD Foundation and NTM Info and Research Inc. Based on survey results from 459 patients with bronchiectasis, the stakeholder panel identified 27 patient-centered research priorities for bronchiectasis in the areas of bronchiectasis treatment and prevention of exacerbations, improving treatment of exacerbations and infections, improving health-related quality of life, predictors of poor prognosis, understanding the impact of underlying conditions, and conducting patient-centered clinical trials. These priorities should further inform the development and evaluation of both new and previously unproven therapies, with particular attention to the inclusion of patient-reported outcomes. We anticipate a great deal of progress will be made in the field of bronchiectasis in the next decade.",
keywords = "bronchiectasis, disease progression, drug therapy, health-related quality of life, infection",
author = "Emily Henkle and Aksamit, {Timothy R.} and Daley, {Charles L.} and Griffith, {David E.} and O'Donnell, {Anne E.} and Quittner, {Alexandra L.} and Elisha Malanga and Delia Prieto and Amy Leitman and Winthrop, {Kevin L.}",
note = "Funding Information: Financial/nonfinancial disclosures: The authors have reported to CHEST the following: T. R. A. has participated in clinical trials sponsored by Bayer, Aradigm, and Insmed but has not received any personal or research support. C. L. D. received research support from Insmed. D. E. G. has received support as a consultant for Aradigm/Grifols and has received grant support from Insmed. A. E. O. is a principal investigator/received grant support for clinical trials for Aradigm, Bayer, and Insmed and is a consultant for Bayer, Novartis, and Xellia Pharmaceuticals. A. L. Q. has served as a consultant to Bayer and Aradigm and has received grant support from Insmed. K. L. W. has served as a consultant to Bayer and has received grant support from Insmed. None declared (E. H., E. M., D. P., A. L.)., Role of sponsors: The sponsor had no role in the design of the study, the collection and analysis of the data, or the preparation of the manuscript. The views and statements in this manuscript are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its Board of Governors, or its Methodology Committee., Other contributions: We thank the Patient Advisory Panel (Cynthia Flora, MEM, Tim Foster, Barbara Hudson, JD, Michael Kitson, Mary Kitlowski, Beth McKnight, and Margery Stalch) and additional stakeholders from OHSU (Megan Wardrop, MS), the COPD Foundation (William Clark, Peter Amari, Vincent Malanga, Gretchen McCreary, MA, and David Mannino, MD), and NTM Info and Research Inc (Philip Leitman)., Additional information: The e-Appendix can be found in the Supplemental Materials section of the online article. Publisher Copyright: {\textcopyright} 2018 American College of Chest Physicians",
year = "2018",
month = nov,
doi = "10.1016/j.chest.2018.06.032",
language = "English (US)",
volume = "154",
pages = "1016--1023",
journal = "Chest",
issn = "0012-3692",
publisher = "American College of Chest Physicians",
number = "5",
}