US Patient-Centered Research Priorities and Roadmap for Bronchiectasis

Chest: The Journal of Circulation, Respiration and Related Systems

Elisha Malanga^7¹  Amy Leitman^8²  Charles L. Daley^3³  Anne E. O’Donnell^5⁴  Delia Prieto^7⁵  Alexandra L. Quittner^6⁶  Emily Henkle^1⁷  Timothy R. Aksamit^2⁸  David E. Griffith^4⁹ 

[1] COPD Foundation, Miami, FL^7;Department of Infectious Disease, OHSU School of Medicine, Portland, OR^9;Division of Mycobacterial and Respiratory Infections, National Jewish Health, Denver, CO^3;Georgetown University Medical Center, Washington, DC^5;NTM Info & Research, Coral Gables, FL^8;Nicklaus Children’s Research Institute, Miami, FL^6;OHSU-PSU School of Public Health, Portland, OR^1;Pulmonary Disease and Critical Care Medicine, Mayo Clinic, Rochester, MN^2;University of Texas at Tyler, Tyler, TX^4

关键词: bronchiectasis;    disease progression;    drug therapy;    health-related quality of life;    infection;    BSI;    Bronchiectasis Severity Index;    CF;    cystic fibrosis;    EMBARC;    European Multicentre Bronchiectasis Audit and Research Collaboration;    HRQoL;    health-related quality of life;    NTM;    nontuberculous mycobacteria;    NTMir;    NTM Info and Research Inc;    QOL-B;    Quality of Life-Bronchiectasis instrument;   

DOI  :  10.1016/j.chest.2018.06.032

学科分类：呼吸医学

来源: American College of Chest Physicians

【 摘 要 】

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.

【 授权许可】

CC BY