Identifying Patient-Centered Bronchiectasis Research Priorities: PCORI Engagement Award

Posted on May 06, 2016   |   
Author: Gretchen   |   
10 Comments   |   
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This blog post was written by Dr. Emily Henkle, researcher at Oregon Health & Sciences University.

In January of this year, 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 and create a roadmap for bronchiectasis research. The project is an important collaboration between patients, the COPD Foundation, NTM Info & Research, researchers, and healthcare providers from across the U.S. Here we describe the project and invite you to share your thoughts and experience with bronchiectasis in a brief, anonymous patient survey. The survey link is provided at the end of the post.

A research roadmap is made up of several components:

  • Background describing why the roadmap is needed
  • Key research questions that need to be answered
  • Next steps to answer the research questions

For this patient-centered roadmap development process, patient input is critical. We hope that BronchandNTM360social will provide a broad base of patients and stakeholders who will be able to review and comment on research priorities, outcomes, and treatment comparisons of interest to patients, and suggest mechanisms to fund needed research. The roadmap will provide essential direction for future non-CF bronchiectasis research and therefore the most efficient progress in caring for patients with this disease.

Now is an opportune time to bring patients and clinical stakeholders together to define meaningful, patient-centered research. There are increasing numbers of bronchiectasis patients. The COPD Foundation has spearheaded the development of a Bronchiectasis Research Registry, but it remains researcher-driven. There are no published U.S. guidelines for bronchiectasis treatment in patients without underlying cystic fibrosis, but in 2010 the British Thoracic Society produced guidelines summarizing current therapies. This guideline revealed a lack of safety and effectiveness data to guide treatment and highlighted the need for research in many aspects of this disease. It did not, however, take a patient-centered approach and to date there has been little or no patient input into the research of this often devastating disease. There are a number of new therapies being tested, including ciprofloxacin and other inhaled or oral antibiotics. The goals of therapy involve maintaining quality of life and minimizing disease progression and we believe that there is routine use of a number of untested therapies (e.g. antibiotics, steroids, bronchodilators, hypertonic saline, others). We need input on which interventions are most appealing or concerning to patients and which outcome measures are most important. A research roadmap, developed in collaboration with patients, will provide essential direction for future bronchiectasis research.

We are asking the BronchandNTM360social community to provide input throughout the roadmap development. The needs assessment survey of bronchiectasis patients linked at the end of the post will provide the starting point for a patient-centered research roadmap. After results have been tabulated, we will work with key collaborators including a seven-member Patient Advisory Panel and clinical research stakeholders to develop and refine the roadmap document. The draft report will be posted on the Bronchiectasis and NTM Initiative website and open-ended questions will be posted in the Questions and Answers section of BronchandNTM360social to allow the broader bronchiectasis community to provide feedback. The final report will be made available to the public on the Bronchiectasis and NTM Initiative website. The roadmap will be used to inform analyses of current Bronchiectasis Research Registry data, identify additional variables to potentially collect within the Registry, and to inform the design and generation of future study proposals including those of new therapeutic clinical trials.

Please note: the survey was closed as of September 30, 2016, so the link has been removed from this blog post.

10 Comments



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  • I'm so glad that people living with Bronchiectasis can share what is important to them - and that researchers will listen and use this input to guide their future studies!
    Reply
    • I agree Megan, the patient perspective is essential and I'm glad that more research is being inclusive of it nowadays!
      Reply
  • I am looking forward to the results / the roadmap.
    We all need to see ongoing progress being made.:)
    Reply
  • found out recently I have bronchiectasis.Infection called Pseudomonas.Currently doing 14 days of liquid infusions of 2 antibotics.Not sure this is going to nip it in the bud.I am new to this site,just looking for good information and support. Thanks!!
    Reply
  • I am a bronchiectasis patient found 2 years ago by ct scan. I am glad there is more research on this lung disease. We need more research to help more ppl with this. I think there are more with this that know.
    Reply
  • Today is Oct 18, 2016. I took the survey as invited. At the end it stated survey open until Sept 30, 2016. Invitation to take survey should be clarified or removed.
    Reply
    • Thanks McLyle, we have noted that the survey has been closed and removed the survey link.
      Reply
  • I was diagnosed ap. 15 years ago with severe bronchiectasis with MAC in right lung. Coughed up blood fairly often for several years. Right middle lobe removed within 1st year. Ap. 15 years Avelox and Zithromax have helped keep condition pretty stable, light case of bronchiectasis now in left lung. Anyone know if condition qualifies for lung transplant? Looking ahead... Thanks
    Reply
    • Hi McLyle, I hope other community members chime in here but if they don't, I would encourage you to post your question in the Questions and Answers section to get more visibility.
      Reply
  • Hello McLyle, nice to meet you. I also used to cough blood often. I can't have a surgery to remove the damaged part of my lobe because my bronchiectasis is diffuse and in many parts of my lung. I don't know about transplant but I think you can ask your doctor about the qualification to have lung transplantation. I'm happy that your conditio is stable. Have a nice day :)
    Reply
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