What is the prognosis?

This is a question that many people have and often do not ask about. We found that even people who have had bronchiectasis for many years still were uncertain about how it may progress or what may happen in the future.

Here are some quotes from patients who took part in interviews about their experiences:

“I think, maybe they’re things that can’t be answered but, you know, I’m still curious, ok, with the condition as it is, and if I look after myself with exercise and do the physio and keep infections at bay, is it going to get worse regardless? Or actually will that keep it as is?  I still don’t really know the answer to that, and that’s quite important to know.” Mike, 43

“Curable? Could I have an operation to just sort of clear it out? Could I control it, basically?... I wasn’t really shocked because I felt fine at the time, but obviously in future I just want to know what the deal would be.” Tom, 33

“I suppose you want to know what could make it get worse, if it could get worse, what could cause that. Or, is this the level that’s it going to be if I you know do what I’m told, as I don’t know how things might progress as I’m older and less active.“ Mariella, 63

"I always had it in my head I was going to die with it you know, and that’s what used to worry me." Celia, 67

• Previous work has shown bronchiectasis causes repeated infections- newer treatments seem to reduce these infections but patients will still get infections from time to time. Some patients do seem at risk of either more severe infections or more frequent infections.
• In general we think that bronchiectasis is a long term condition and that most people do pretty well with it. Researchers are developing scoring systems to work out who at more risk of being poorly to help us target more intensive treatments to these patients.
• Some adults with bronchiectasis developed symptoms in childhood, so living with bronchiectasis for many years after diagnosis is well recognised. 

So who will be at risk of being sicker with their bronchiectasis?

• This is a hard question to answer but recent research suggests we can start to categorise patients into those at risk of getting sicker more than the average.
• The Bronchiectasis Severity Index is a new tool that seems to help us in this but it is still being studied. The tool involves scoring simple tests (breathing tests, level of breathlessness) and information on bugs.
• When your medical team put together these results, scores correspond to categories of mild, moderate or severe bronchiectasis. The sicker patients such as those with low levels on breathing tests, who are older than 80, are very breathless and have been hospitalised before with bronchiectasis have higher Bronchiectasis Severity Index scores.
• In theory, people who are in this 'severe' group are more likely to have more flare ups or be hospitalised in the future. However, this group with a high score will also often contain patients who are pretty well, so more research is needed to find out which patients need more treatment.