Return to all articles Preliminary Bronchiectasis Needs Assessment Survey Results & Roadmap Next Steps Posted on October 31, 2016 | 10 Likes 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). What are patients being treated with? We asked about treatment for at least 30 days in a row over the last year. The majority of patients (58%) reported treatment with inhaled corticosteroids, and an additional 16% had considered inhaled corticosteroids. Around one third had stopped inhaled corticosteroids at some point due to side effects. Approximately one quarter had taken oral steroids, and 11% had stopped taking oral steroids due to side effects. Just over half reported using positive expiratory pressure airway clearance devices and 20% reported current use of the vest (another 17% had considered its use). Nearly half of patients had taken azithromycin, and 19% stopped taking azithromycin due to side effects. Very few had taken inhaled tobramycin or other antibiotics. What were the top ranked research priorities? The most highly ranked research priorities include: Treatment of bronchiectasis Treatment of exacerbations/infections Prevention of exacerbations Priorities ranked moderately important include: Impact of the disease on health-related quality of life Biomarkers as predictors of poor prognosis Apply measures of disease severity at diagnosis The importance of underlying conditions Patient-centered outcomes in clinical research In the roadmap document, we will describe the 8 priorities listed above, add specific objectives where applicable, and describe the key next steps necessary to move the field of bronchiectasis research forward in the U.S. For example, Europe has begun enrollment in a 10,000 patient registry effort (EMBARC, https://www.bronchiectasis.eu/registry) that will follow patients for 5 years to better understand the natural history. To provide similar data on bronchiectasis patients in the U.S., it will be important to secure the additional funding necessary to expand the U.S. Bronchiectasis and NTM Research Registry, a successful collaboration established by the COPD Foundation in 2007 that has enrolled over 2,000 patients at 13 sites. We look forward to your thoughts and comments on the Roadmap draft.