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Archive: October 2016

Preliminary Bronchiectasis Needs Assessment Survey Results & Roadmap Next Steps

Posted on October 31, 2016   |   
Author: Gretchen   |   
2 Comments   |   
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Preliminary Bronchiectasis Needs Assessment Survey Results and Roadmap Next Steps

Emily Henkle, PhD, MPH
OHSU-PSU School of Public Health

As we describe in an earlier blog post, a team led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU) began working on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities for bronchiectasis research and create a roadmap for bronchiectasis research. To date, we have held two stakeholder webinar meetings and conducted an anonymous needs assessment survey. Clinical stakeholders are currently reviewing the draft roadmap document. The draft roadmap will be available on BronchandNTM360social by November 11, 2016 for your review and feedback. 

Below we present a few of the key results from the needs assessment survey, in preparation of the draft roadmap release. The results below are from 277 patients who self-identify as having a bronchiectasis diagnosis from their doctor.

Who completed the survey?

The study was generally representative of bronchiectasis patients: 15% under 30 years of age, 81% 50-79 years, and 4% over age 80 years. Most (87%) were women. Patients from all regions of the U.S., and even a small group from outside the U.S. completed the survey. Just over 50% of patients reported a history of nontuberculous mycobacterial (NTM) infection. Among underlying diagnoses, 30% reported chronic obstructive pulmonary disease and 9% reported a genetic condition, other than cystic fibrosis. Overall, 23% reported no known genetic conditions or other underlying lung disease (“idiopathic”bronchiectasis).

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Tags: bronch and NTM Research Roadmap Survey
Categories: Research

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