5 year Outcome of Bronchiectasis and NTM Registry in US

Posted by pacathy @pacathy, Oct 19 9:29am

I don't remember this study on bronchiectasis and NTM published last year being shared here. If it was, I'll delete this. It's based on a registry many of us are enrolled in at the Bronchiectasis Centers. I found it interesting and mostly hopeful with MAC patients generally being stable over the 5 years.
https://www.atsjournals.org/doi/10.1164/rccm.202307-1165OC

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pacathy | @pacathy | Oct 23 6:18pm

@reneemc
I'm responding to your comment that you that you found the study results "terrifying" in this thread, rather than in ABC thread. I believe Sue intends that thread to be collection of resources rather discussion.

What was it that you found terrifying? Perhaps I had bleaker expectations than you before reading it.

Here are some things I found hopeful: "exacerbations, hospitalizations, and lung function decline were stable through 5 years of follow-up. All-cause mortality was lower than seen in other studies...

"The impact of nontuberculous mycobacteria on disease progression and mortality risk in patients with bronchiectasis may be lower than previously believed."

It also clarified the number of patients with bronchiectasis who acquire NTM (a frequent question here) : "probability of NTM acquisition by Year 5 of 20.6% and an annual rate of 4.1%. "
This is a higher rate than the 10% rate I found in a study after I was diagnosed, but lower than others I've seen since. I think UK reported 12.%

The registry is from large US centers and the NTM rate is probably higher in their patients at enrollment because many are referred when NTM is found. I'm guessing they see a sicker group of patients than most pulmonologists.