US Patient-Centered Research Priorities and Roadmap for Bronchiectasis

Emily Henkle, Timothy Aksamit, Charles L. Daley, David E. Griffith, Anne E. O'Donnell, Alexandra L. Quittner, Elisha Malanga, Delia Prieto, Amy Leitman, Kevin L. Winthrop

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalChest
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Bronchiectasis
Research
Patient Advocacy
Needs Assessment
Therapeutics
Chronic Obstructive Pulmonary Disease
Lung Diseases
Consensus
Decision Making
Fibrosis
Chronic Disease
Quality of Life
Clinical Trials
Organizations
Infection

Keywords

  • bronchiectasis
  • disease progression
  • drug therapy
  • health-related quality of life
  • infection

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine
  • Critical Care and Intensive Care Medicine
  • Cardiology and Cardiovascular Medicine

Cite this

Henkle, E., Aksamit, T., Daley, C. L., Griffith, D. E., O'Donnell, A. E., Quittner, A. L., ... Winthrop, K. L. (Accepted/In press). US Patient-Centered Research Priorities and Roadmap for Bronchiectasis. Chest. https://doi.org/10.1016/j.chest.2018.06.032

US Patient-Centered Research Priorities and Roadmap for Bronchiectasis. / Henkle, Emily; Aksamit, Timothy; Daley, Charles L.; Griffith, David E.; O'Donnell, Anne E.; Quittner, Alexandra L.; Malanga, Elisha; Prieto, Delia; Leitman, Amy; Winthrop, Kevin L.

In: Chest, 01.01.2018.

Research output: Contribution to journalArticle

Henkle, E, Aksamit, T, Daley, CL, Griffith, DE, O'Donnell, AE, Quittner, AL, Malanga, E, Prieto, D, Leitman, A & Winthrop, KL 2018, 'US Patient-Centered Research Priorities and Roadmap for Bronchiectasis', Chest. https://doi.org/10.1016/j.chest.2018.06.032
Henkle, Emily ; Aksamit, Timothy ; Daley, Charles L. ; Griffith, David E. ; O'Donnell, Anne E. ; Quittner, Alexandra L. ; Malanga, Elisha ; Prieto, Delia ; Leitman, Amy ; Winthrop, Kevin L. / US Patient-Centered Research Priorities and Roadmap for Bronchiectasis. In: Chest. 2018.
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