Bronchiectasis Understanding and Research on Daily Experiences and Needs

BURDEN Initiative

(Bronchiectasis Understanding and Research on Daily Experiences and Needs) 

About Bronchiectasis

The BURDEN initiative is a research project to examine the impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE) on the everyday life of people living with NCFBE and their caregivers. It is also commonly referred to as bronchiectasis (without cystic fibrosis) or just bronchiectasis. Bronchiectasis is a chronic, often progressive lung disease characterized by irreversible and abnormal widening of the bronchi and chronic symptoms.

 

Causes:
  • There are many underlying causes of bronchiectasis. In many cases the cause cannot be identified.
  • Chronic inflammation and/or infection might play a role in the development of bronchiectasis.
  • Genetic factors may also play a role, especially in certain hereditary diseases.
Associated conditions/
related comorbidities:

People living with pre-existing lung conditions are at higher risk to be affected by bronchiectasis (without cystic fibrosis):

    • Chronic lung diseases like severe COPD or asthma
    • Alpha-1 antitrypsin deficiency
    • Primary ciliary dyskinesia (PCD) syndrome
    • Recurrent pneumonia
    • Immune deficiency
    • Chronic lung damage from tuberculosis or other mycobacterial infection
Most common symptoms:
  • Chronic and persistent cough
  • Thick mucus
  • Fatigue
  • Excessive sputum production
  • Shortness of breath
  • Recurrent respiratory infections
  • Chest pain

About the BURDEN initiative

While previous studies have examined the medical impact of bronchiectasis, little is known about its impact on everyday life activities and emotional well-being of people living with bronchiectasis and their caregivers1,2,3. The BURDEN initiative seeks to address this knowledge gap, first by conducting interviews, and second by performing an online survey in the USA, Europe (UK, Germany, France, Spain & Italy) and Japan. Both parts will be open for people living with bronchiectasis (without cystic fibrosis) or for those that care for them in their local language.

 

The objectives are:
  • Increasing awareness of the impact of bronchiectasis on the lives of people living with the disease and those who care for them.
  • Enhancing quality of research, care, and information materials.
  • Empowering the bronchiectasis community.
  • Generating patient relevant insights/evidence that may be considered by health care decision makers globally.
  • Demonstrating disease burden to healthcare decision-makers by sharing information delivered by people living with bronchiectasis and those who care for them.

The BURDEN initiative process overview

  • Initially, interviews by phone or video will be conducted with individuals who have bronchiectasis (without cystic fibrosis) or those who care for them.
  • The interviews will last approximately 1 hour, and participants will be compensated for their time. Before conducting the interview participants will agree to a separate data privacy policy and consent form.
  • The insights gathered from these interviews will be used to develop an online survey for a larger group of people with bronchiectasis (excluding cystic fibrosis) and their caregivers.
  • The online survey, the second part of this initiative, aims to collect information from a broader audience regarding bronchiectasis (excluding cystic fibrosis).
  • Completing the survey should take around 20 minutes, and it can be submitted anonymously in the language of your preference.
  • You can take part in both parts or just one of them.
  • You will have the option to receive a summary report.

Currently the interview phase of the project is in process and you can register to be contacted if you wish to participate. If you want to take part in the online survey, you can click the link to be notified when the online survey phase begins.

Who can participate in the BURDEN initiative?

People with a confirmed diagnosis of bronchiectasis* (without cystic fibrosis**) or those that care for them, who are 18 years of age or older, and living in the USA, Japan, UK, Germany, France, Italy, or Spain. 

Affected people should currently have symptoms of bronchiectasis (without cystic fibrosis) and having experienced at least one bronchiectasis flare (exacerbation)*** in the past year. 

Caregivers should provide care on a daily basis and living with someone who fits this description.

(Other eligibility criteria may apply)

*Bronchiectasis is a chronic, progressive lung disease characterized by irreversible and abnormal widening of bronchi and chronic symptoms. Not to be confused with bronchitis.

**Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.

***Please note that a bronchiectasis flare (exacerbation) is associated with a change in therapy suggested by your doctor and could be associated, amongst others, with the following symptoms:

          • Increased coughing
          • Increased sputum production
          • Bloody sputum production
          • Change of color and viscosity of sputum
          • Bouts of severe breathlessness/dyspnoea and/or discomfort in the chest
          • Increased fatigue

Why participate in the BURDEN initiative?

The impact of NCFBE on the lives of patients and their families is still not fully understood by many healthcare decision-makers and providers.

Your experiences are important and can help to raise awareness and may improve understanding of bronchiectasis care in your country and other participating countries.

By participating, you could ensure that the voices of people living with bronchiectasis and of those who care for them are heard and understood.

The results will be made available to all people living with bronchiectasis, caregivers and other stakeholders who expressed their interest, so that society will benefit from the survey results. If you are participating, either in an interview or in the online survey of this initiative, you can receive the results in the language in which you participated. Learn more in the FAQ section below.

admedicum team

Who is organizing this initiative?

Insmed Incorporated, a global biopharmaceutical company, is committed to focusing on serious or rare diseases. The BURDEN initiative has been initiated and funded by Insmed Incorporated with funding provided to admedicum to organize and execute the research project.

admedicum is a company dedicated to ensuring that interests and experiences of patients are better integrated into research, development, and provision of health care by directly involving them. Learn more at: www.admedicum.com

In the US interviews will be performed by Engage Health Inc. on behalf of admedicum. Learn more at: www.engagehealth.com

Frequently asked questions (FAQ)

How long does it take to participate in an interview or to complete the online survey?
  • Participation in an interview takes about one hour and completing the online survey will take about 20 minutes.
How can I participate in an interview?

Good to know about the interviews:

  • Both people living with bronchiectasis or those that care for them are interviewed.
  • The interviews are conducted digitally using video conferencing software (such as Zoom), or by telephone.
  • The interview will take approximately one hour.
  • A separate participation consent form and data privacy agreement will be provided before the interview.
  • Participant’s time spent on the interview will be compensated.
  • Interviews will be conducted in local language by trained interviewers. No preparation or specific knowledge is needed to participate.
How can I participate in the online survey?
What are the risks of participating in the initiative?
  • The interviews can be emotionally stressful for some patients. The interviews are conducted by trained professionals. It is possible to cancel the interviews or not answer individual questions at any time without giving reasons and without negative consequences.
  • Participation in the online survey can also be cancelled at any time.
I don’t have a diagnosis of bronchiectasis but I have the symptoms and experienced at least one of the described bronchiectasis flares…. Should I complete the survey?
  • Thank you for your interest in the BURDEN initiative. Unfortunately, you need a medical diagnosis of bronchiectasis (without CF) to participate in the interviews or survey.
I am diagnosed with bronchiectasis and I do have cystic fibrosis. Am I allowed to participate?
  • Thank you for your interest in the BURDEN initiative. This initiative is directed to people living with bronchiectasis without cystic fibrosis. This is based on the situation of care and associated limitations and burden of the disease for people with cystic fibrosis being significantly different from those of others. We ask for your understanding that you cannot participate.
I care for someone who has been diagnosed with bronchiectasis, should I register myself for an interview or complete the survey?
  • If you are living together with someone diagnosed with bronchiectasis (without cystic fibrosis) and provide care on daily basis, you can take part in the initiative. You can also share the link to this webpage with your family member, any other families or people living with bronchiectasis (without cystic fibrosis) you may be in contact with. Thank you for your support!
Is the initiative available in any other language?
  • Participation in the initiative (interview or online survey) and information about the project is available in English, French, Italian, German, Spanish and Japanese. Please complete the online survey only once per person in the language you are most comfortable in.
How will my personal data (privacy) be protected?
  • This project and the data collection are in full compliance with all applicable data protection regulations in the USA, Japan and Europe (including any applicable local country regulations).
  • A separate participation consent form and data privacy agreement will be provided before the interview. Please click here to read the document.
  • Data gathered from the interviews will be processed anonymously, and the collection of data through the online survey will be conducted anonymously.
  • Please click here to read the privacy policy of the online survey. Please note that you will also be prompted to read the privacy policy when you start to complete the survey.
What will happen with the survey results?
  • If you complete the survey and/or interview and opt-in, we will send you a summary of the survey results by e-mail once both parts of the initiative (interviews and survey) are completed and the results are analyzed.
  • We will also share the aggregated results of the survey with healthcare professionals who are involved in the care of people living with bronchiectasis and those stakeholders who expressed their interest.
  • We aim for a scientific publication of comprehensive survey results, which is dependent on receiving a minimum number of responses per country.
How can I support the BURDEN initiative?
  • If you like the BURDEN initiative, please share the link with other people living with bronchiectasis (without cystic fibrosis) you know or patient groups who might be affected by bronchiectasis (without cystic fibrosis).

If you have any further questions, please do not hesitate to send us an e-mail on BURDEN@admedicum.com.

1 McShane PJ, et al. Non-cystic fibrosis bronchiectasis. Am J Respir Crit Care Med. 2013 Sep 15;188(6):647-56. doi: 10.1164/rccm.201303-0411CI.
2 Cole PJ. Inflammation: a two-edged sword–the model of bronchiectasis. Eur J Respir Dis Suppl. 1986;147:6-15.
3 Kolbe J. Aspects of the modern management of bronchiectasis. Pol Arch Intern Med. 2022; 132: 16137. doi:10.20452/pamw.16137
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