Online survey for patients affected by non-tuberculous mycobacteria lung disease

(NTM-LD) in Europe

E N P A D E

European NTM lung disease Patient Disease Experience survey

For other possible names for NTM lung disease click here

About NTM lung disease

The ENPADE survey is combination of an anonymous online survey and a number of pseudonymised interviews among patients affected by NTM lung disease (NTM-LD). NTM-LD is a bacterial infection caused by non-tuberculous mycobacteria for which treatment typically requires taking multiple antibiotics, often for several years.

NTM-LD is a rare lung disease. It particularly affects already vulnerable patients with chronic lung conditions like COPD, bronchiectasis, cystic fibrosis or patients with an impaired immune system.

 

NTM-LD can also be referred to as:

  • nontuberculous mycobacterial disease
  • mycobacteria other than tuberculosis (MOTT)
  • atypical mycobacteriosis
  • NTM pulmonary disease

 

Most common mycobacteria species which cause NTM-LD:

  • M. kansasii
  • M. xenopi
  • M. abscessus
  • Mycobacterium avium complex (MAC):
    • M. avium
    • M. intracellulare
    • M. chimaera

 

 

Patients with chronic lung conditions are at higher risk to be affected by a NTM-LD:

  • COPD
  • bronchiectasis
  • cystic fibrosis
  • alpha-1 antitrypsin deficiency
  • chronic asthma
  • impaired immune system

 

Most common symptoms for NTM-LD: 

  • chronic cough
  • fatigue
  • fever
  • loss of appetite
  • night sweat
  • weight loss

 

About the ENPADE survey

While the health concern is growing, with the medical basis being researched, the patients’ voice on the burden of disease and experience with care are still overlooked. The ENPADE survey aims to look at this situation in more detail.

By participating in this survey, we would gain insights from patients directly on the impact of the disease for patients in every day lives and activities. It will also contribute to better understand patient’s experience with care and needs. Finally, the results of this survey would likely contribute to improving the health care of NTM-LD patients in Europe.

The objectives are:

  • Gain insights by hearing the patient’s voice on the disease impact for patients’ everyday life and activities.
  • Understanding patients’ burdens and needs.
  • Detection of potential access hurdles to medical care and healthcare gaps.

The survey should take about 15-20 minutes to complete and can be submitted fully anonymously. If you chose to share your email address to receive the results at the end of the survey, you will receive a report after an evaluation of the responses is complete. Afterward, your email address will be deleted, unless you “opt-in” and agree to be contacted again by admedicum for future exchanges.

Click here to read the privacy policy. 

In addition to the online survey, interviews with a few patients will be conducted by phone or video to understand further aspects of NTM-LD in more detail. If you wish to be contacted for those interviews, you will have the opportunity to leave your contact details at the end of the survey for us to contact you. 

Please note that your contact details are disconnected from the answers you have previously provided in the survey. Therefore, your answers in the survey and personal contact information cannot be combined. Before you decide to provide such information, you will be asked to agree to a separate privacy policy.

Who can complete the ENPADE survey?

  • 18 years of age Or older
  • diagnosed with NTM lung disease
  • Either currently being treated or not treated but having symptoms of NTM lung disease

Why complete the ENPADE survey?

The impact of NTM lung disease on patients’ lives and on those close to them is still not fully understood by many healthcare decision-makers and providers.

 Increase awareness and help to improve health care for the NTM-LD community.

Your experience matters and can help to improve the management of NTM-LD within your country and other European countries.

By your participation you can ensure that the patient voice is heard and understood.

The results will be shared with all patients and stakeholders who have a justified interest, hence society will benefit from the survey outcomes.

You can receive the results in the language you used to complete the survey.

Who is organizing it?

admedicum Business for Patients is organising this survey. admedicum is dedicated to ensure that interests and experiences of patients are better integrated into research, development and provision of health care. Learn more at: www.admedicum.com

The ENPADE survey is sponsored by a research-based pharmaceutical company.

Frequently asked questions

How long does it take to complete this survey?

Participation in the ENPADE survey will take about 15-20 minutes

How can I participate in an interview?

admedicum would like to get in contact with responding patients for an interview by phone or video call. To participate in an interview you need to complete the online survey and leave your contact details. Please note that we may not interview everyone who gives their consent.

Key points of the interviews:

The interview will take approximately one hour

A separate participation and data protection agreement will be made before the interview

The interview will be compensated

Interviews will be conducted in local language by trained interviewers. Specific previous knowledge is not needed

How can I support the ENPADE survey?

If you like the ENPADE survey, please share the link with other NTM lung disease patients you know or patient groups who might be affected by NTM lung disease.

I have COPD, asthma, or another respiratory disorder in addition to being diagnosed with NTM-LD…. Should I complete the survey?

Yes! Those are all conditions associated with NTM-LD. These are exactly the patients we would like to give a voice through this survey.

My family member has been diagnosed with NTM-LD, should I complete the survey?

Caregivers should not take part in the survey as it is directed to patients only, but you can forward this survey to your family member or support him/her in filling it. You can also share the link to this webpage with any other families or people living with NTM-LD you may be in contact with. Thanks for your support!

Is the survey available in any other languages?

The survey is available in English, French, Spanish, Italian, German and Dutch. Please only complete the survey one time per person in the language you are most comfortable in.

How will my personal data (privacy) be protected?

The only personal information collected at the end of the survey is your email address should you choose to provide it. You can also participate in the survey without providing your contact details. Under no circumstances will your contact details or personal information be shared with the sponsor or any other third party.

Please click here to read the privacy policy. 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 opt-in, we will send you a summary of the survey results by e-mail once all participants have completed the survey and the results are analyzed.

Afterwards we will delete your email address. We will also share the aggregated results of the survey with healthcare professionals who are involved in the care of people living with NTM lung disease.

Publication of comprehensive survey results is dependent on receiving a minimum number of responses to each survey.

Supported by

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

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