Severity of lung disease

Hi there. I am a newbie with bronchiectasis. I have recently placed my details with the European Bronchiectasis Registry. I notice that the assessment of disease severity is a relatively new concept in bronchiectasis. This severity index gives predictions of mortality and hospital admissions as well as exacerbations and quality of life. The severity criteria links to age and BMI among other features.

My query concerns the broader use of severity measurements for other lung conditions and if such an index is relevant to other conditions? If so, how helpful for the patient as much as for the GP and clinician?

[Ergendl]

Hi, Terrymate. I'm sorry I can't help with your enquiry as I have COPD rather than Bronchiectasis, but I'm sure someone will be along soon who would be able to respond better. All the best, M.

[Billiejean_2]

Maybe helpful to medical staff but not so sure about it's helpfulness to patients. Obviously, people aren't stupid and know when things are serious or not but being given a projected life expectancy could be very unhelpful. The mind plays a vital role in how people cope with severe illness and if one is told that they're expected to not survive beyond a certain time, they might just give up and make the statisticians rub their hands with glee that their forecast was correct. Okay, this is an extreme example but you know what O mean.

[Hidden in reply to Billiejean_2]

Billiejean, I quite agree. I don't want that sort of prognosis!!!!!!!!!!! When I fell last year,5" head wound to the back of head, severely broken sternum, something neck and now just found out compression fractures to the upper spine. Bad enough but I could have been killed or paralysed. Let the medics keep those prognosiss to themselves, unless individuals request the details.

Kaye x

[Nikkers]

Welcome to the site Terrymate, I hope you will enjoy being here. As for your post ....what a stupid thing to give such am assessment. I wholly agree with BJ and KS, it's daft to predict such things, it makes people worry, which in turn makes them ill.

Bronchiectasis is a much overlooked disease ( getting more attention of late) which can be slowly progressive, but I've had it for the past 72 years and now I also have COPD.......I'm still here doing everyday things, though just a bit SOB. Don't dwell on that silly assessment, you could just have well gone to a "fortune teller" in a fairground booth to get that....makes about as much sense. XX

[ptliverpool in reply to Nikkers]

Hear! Hear!

[Hidden in reply to Nikkers]

Hello Nikkers. The severity index given by EMBARC does not include life expectancy. It is not a stupid, daft or silly thing at all. It merely provides an estimate of the likelihood of mortality and hospitalisation, in % terms, based on a scoring system which has been validated in 1,310 patients across 5 European centres. It is primarily intended for clinicians although patients can read it all the information on the site too, which of course is entirely up to them.

[Nikkers in reply to Hidden]

Hi Hanne62. I have no idea ( or care) what the EMBARC says.....I was just answering what Terrymate had written and trying to offer a little hope.

[Hidden in reply to Nikkers]

But, Nikkers, the severity index is actually quite helpful. Even if your score is, say, 8, which is a bit on the high side, it tells you your estimated chance of dying in the next 4 years is between 4 & 11.3%, and hospitalisation up to 19.4%. I find that quite reassuring! It's intended for clinicians though, so if patients don't want to know these details they needn't look. But it's important the information is out there.

The aim of the Registry is to encourage research into bronchiectasis - including new drugs - education of young physicians (sadly lacking at the moment) and standardisation of treatment. This must surely be a good thing?

[Nikkers in reply to Hidden]

Hanne62, you just said that it doesn't include life expectancy, now you're saying - it does?

Anyway, I'm not interested in facts and figures. I've no idea what my "score" is or any of all the other figures that I read about here. When people talk about their fevs and %'s for this and that it goes straight over my head.

I have an illness which, as far as I'm concerned, is what I've lived with most of my life.....if I have an infection - I have standby abs and steroids which I take. If they don't clear it - I go to my GP, because that's what he's there for.

I'm certainly not going to sit at home worrying about some % or other silly figure that someone in a white coat saw fit to come up with, and make myself worse by worrying about it! Makes no difference anyway, I don't need to know - my GP/Consultant does, and they'll deal with it accordingly.

The power of the mind can be a dangerous thing and should not be influenced by input from various sources - most of which the layman does not understand.

[Hidden in reply to Nikkers]

I wouldn't like to know my life expectancy either I think I can work that out by myself. By the way I live people are entitled to there own opinions and we should respect that.

[Hidden in reply to Nikkers]

That's correct, I did say it doesn't include life expectancy. "Life expectancy" and "an estimate of the likelihood of mortality in % terms" are not the same thing

[skinnylizzy59]

Hi terrymate, I have Bronchiecstasis with pseudomonas auregosa. At my last clinic visit on 15th December I asked the Doctor about the stages of the illness I had heard about and she told me that there are no stages for Bronchiecstasis as it is one of those illnesses that cannot be measured. I will have a look at the European Bronchiecstasis Registry to see what they say. Take care and best wishes for a happy and healthy New Year. Love Lizzy x

[Covenham]

Thank you terrymate, for offering us this most comprehensive website.

I have looked at it today, albeit briefly, and was most interested in some of its articles.

I have been particularly keen to learn more about about Vitamin D deficiency and its connection with Bronchiectasis.

Wishing you good health and a happy New Year.

[cofdrop-UK]

Again Terry just seen your post. I am so pleasedd you are on the European Bronch Registry, as am I and that you have brought it to the attention of this site. I know from the later replies to posts from you that you are also interested in ERS?ELF. I'm not sure some people appreciate what this 50m euros and renewed interest in ncfbe means to ncfbe, which has been in the wilderness for decades and how it will also raise our profile and improve education and knowledge withing the medical profession who do not specialise within the respiratory field.

Love cx