Bronchiectasis symptom survey; BURDEN

[Tdster43]

Hi everyone, I was sent this; its a request for help in surveying peoples experience and symptoms of bronchiectasis

Why should people participate in the BURDEN initiative?

Participants in the BURDEN initiative can help 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.

People who participate, in the online survey of this initiative, can receive the results in the language in which they participated.

How can you support the BURDEN initiative?

We would be extremely grateful if you considered supporting the BURDEN initiative in an appropriate way, for example by sharing the website link

bronchiectasis-burden.com

With your help we can ensure the BURDEN initiative is visible and known to all those who may like to participate.

It is being run by a company to help raise the profile of bronchiectasis (likely to help improve access to new medicines as they come through)

Various European countries are involved / being surveyed so nice if UK has a strong showing/ lots of volunteers

The weblink says " Completing the survey should take around 20 minutes, and it can be submitted anonymously in the language of your preference."

This might not be for everyone but sharing as we certainly need to raise the profile..

Hope you are all well!

Tdster

[Swizzy]

Survey completed. However it is flawed because as always with researchers, they fail to take into account those who have lived with bronch all of their lives and only ask for effects 'after diagnosis'. This means that the heavy lifetime burden is discounted.

[Tdster43 in reply to Swizzy]

Thanks for hep with survey

Really good point; delay to diagnosis this paper notes this in the UK

Patient pathways for four major chronic respiratory diseases in England between 2008 and 2021

BMJ Open Respir Res. 2024 Aug 28;11(1):e002273. doi: 10.1136/bmjresp-2023-002273.

see pubmed.ncbi.nlm.nih.gov/392...

Time (months) (median (IQR)) between symptoms and diagnosis, averaged over three time periods, was lowest in asthma (~7.5 (1.3-16.0)), followed by COPD (~8.6 (1.8-17.2)), ILD (~10.1 (3.6-18.0)) and bronchiectasis (~13.5 (5.9-19.8)). Time from symptoms to diagnosis increased by ~2 months in asthma and COPD over the three time periods.

[Patk1]

Thanku

[Tinker26]

I've completed it too x

[Rattle]

thanks, completed survey

[Tdster43 in reply to Rattle]

thanks to Rattle and everyone else who have helped int the survey