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Preliminary Bronchiectasis Needs Assessment Survey Results & Roadmap Next Steps

Posted on October 31, 2016   |   
Author: Gretchen   |   
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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

What is an Adverse Drug Reaction?

Posted on September 30, 2016   |   
Author: Gretchen   |   
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What is an Adverse Drug Reaction?

Many of us take medications on a regular basis. What constitutes an adverse reaction to the medication versus a normal side effect? Do you know how to tell the difference? Check out some tips here:

https://www.copdfoundation.org/COPD360social/Community/Blog/Article/476/What-is-an-Adverse-Drug-Reaction.aspx

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Categories: Awareness Support

The Importance of Indoor Air Quality

Posted on September 20, 2016   |   
Author: Gretchen   |   
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Air quality is important to every individual, with or without a lung condition, but we know it can make all the difference if you are living with a breathing disorder. Read about how to maintain positive air quality within your own home:

https://www.copdfoundation.org/COPD360social/Community/Blog/Article/563/The-Importance-of-Indoor-Air-Quality.aspx

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Categories: Awareness Quality of Life

How does NTM lung disease affect your life?

Posted on September 14, 2016   |   
Author: Delia   |   
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In September of 2015, the Food and Drug Administration (FDA) convened a meeting on Nontuberculous Mycobacterial (NTM) lung disease. The meeting focus was on patients’ quality of life as it relates to the symptoms and treatment of NTM lung disease. Meeting attendees included patients, caregivers, patient advocates, healthcare professionals, patient advocacy organizations, and representatives from the pharmaceutical industry. The meeting allowed for the opportunity to hear directly from patients, caregivers, and patient advocates on their experiences with NTM and how it impacts their daily life. Although a successful meeting with various stakeholders in attendance, very little data exists in published scientific literature on the information discussed during the meeting.

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Categories: Quality of Life Research

Pneumococcal Disease: What You Should Know:

Posted on September 13, 2016   |   
Author: Gretchen   |   
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August was National Immunization Awareness Month. If you have not received your pneumonia vaccine, it is not to late. Read about Pneumococcal Disease and how to prevent it by visiting: https://www.copdfoundation.org/COPD360social/Community/Blog/Article/559/Pneumococcal-Disease-What-You-Should-Know.aspx

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Tags: Immunization
Categories: Awareness

Importance of Research

Posted on July 25, 2016   |   
Author: Delia   |   
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This blog post was written by Gretchen McCreary, Research Coordinator at the COPD Foundation.

Horace Mann said that, “Every addition to true knowledge is an addition to human power.” It is only through asking questions and seeking answers that we elevate the human condition and find power against all that affects us. Research, by definition, is the systematic investigation into and study of materials and sources to establish facts and reach new conclusions. If you live with a rare disease such as Bronchiectasis or NTM, it is customary to want to pursue new avenues and much needed resolutions. This is why research is so important, as well as the power of committed individuals.

Research has contributed to the cure of diseases, improving health outcomes and enhancing the lives of future generations.

Lack of resources and committed parties can impede potential progress. Fortunately, a small group of individuals advocating and pressing for change can have exponential effects. As the old adage says, the squeaky wheel gets the grease, and issues that receive the most attention, even if only affecting a small population, are those with the most vocal advocates. Enhancements in healthcare, pharmaceuticals and prevention of diseases would not be possible without the willingness of those impacted.

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Categories: Research

My experience with BronchandNTM360social and COPD360social

Posted on June 27, 2016   |   
Author: Delia   |   
7 Comments   |   
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I first learned of COPD360social (the online community for COPD) when it launched in late 2014. I registered immediately after learning of COPD360social and have been active since then. As an individual living with bronchiectasis, I was extremely happy for the launch of BronchandNTM360social. These platforms allow me to connect with people who know about (and live with) these diseases. I am able to share many things such as my health condition, daily activities and experiences (good and bad), and seek feedback from other people like me. I feel gratified to have the opportunity to share these things about myself and receive the much-needed support back from the community. Additionally, sharing my experiences on these online communities has helped me talk about and explain my disease to family and friends.

I’ve come to the realization that these online communities are not solely learning about health conditions and problems; they’re much more than that. They allow me to learn about other people’s lives and how they cope with similar situations. I get to discover other participants’ daily activities, exercise, hobbies, and travel experiences. Members have encouraged me to explore different ways to enjoy life, despite my disease.

It is difficult for me to put all of these emotions into words. When I am actively engaging on 360social I feel connected. I feel grateful for the support I receive through these networks, and I sincerely hope others feel the same.

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Categories: Quality of Life Support

It’s a Team Effort – And We Need You

Posted on June 17, 2016   |   
Author: Delia   |   
7 Comments   |   
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The first step to solving a problem is to identify it, which has been an issue for those of us with lung and rare diseases. As a means of increasing awareness, I began entering races. I need to wear a portable oxygen concentrator because of my limited lung capacity. Last year, the magazine Runner’s World had a contest in which the winner would appear on the cover of the December issue. I recognized this as an opportunity to raise awareness of lung diseases and rare diseases to an audience of over 650,000 people.

The contest was in three stages. In the first, only the top male and the top female vote recipients move into the semifinals. The judges determine the other 98 semifinalists. Voting takes place for several months. Friends, family and even people who I’d never even met voted for me, and I made it through to the second round. I wanted people to feel that each vote for me was also a commitment to bringing attention to unneeded suffering and the need for research, treatments and cures.

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Categories: Awareness

Research study to evaluate long-term use of inhaled corticosteroids among non-CF Bronchiectasis patients

Posted on June 15, 2016   |   
Author: Gretchen   |   
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Research study to evaluate long-term use of inhaled corticosteroids among non-CF Bronchiectasis patients

 

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Tags: bronch and NTM Inhaled corticosteroids Research Therapy
Categories: Research

Is pulmonary rehab for you?

Posted on May 26, 2016   |   
Author: Delia   |   
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The Value of Pulmonary Rehabilitation

Do you have questions about the benefits of pulmonary rehab? Interested in learning who should actually seek this structured exercise program? Click here to read a blog post about the value of pulmonary rehab.

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Tags: Pulmonary rehab
Categories: Pulmonary Rehab

Living with Bronchiectasis

Posted on May 06, 2016   |   
Author: Gretchen   |   
15 Comments   |   
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This blog post was written by Mary Kitlowski, founder of Running On Air, who is living with Bronchiectasis.

After years of searching for answers to my health problems, my first real answer came from the diagnosis of bronchiectasis when I was 17 years old. Back in the 70’s and early 80’s the convention was to stay away from too many x-rays. My first chest x-ray revealed a piece to the puzzle that would eventually become my diagnosis of Primary Ciliary Dyskinesia

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Categories: Quality of Life

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

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Categories: Research

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