In contrast with other respiratory diseases like COPD, pulmonary fibrosis and pneumonia, which have well established disease severity scores,.[69-71] assessment of disease severity is relatively new concept in bronchiectasis. A combination of clinical, radiological and microbiological features can be used to assess severity and members of EMBARC recently described a scoring system which has been validated in 1310 patients across 5 European bronchiectasis centres. The bronchiectasis severity index was found to give excellent predictions of mortality and hospital admissions and was also predictive of exacerbations and quality of life giving a broad assessment of disease severity.[16]
Thank you for this Jeff. The Severity Index is referenced as a guideline indicator for clinicians and for those GPs who can find the time in their busy work lives to slot in a visit to the SI, usually linked to a particular patient exploration, diagnosis and treatment. It is quite comprehensive, as well as reasonably accessible to those lay persons such as myself who are interested in such an Index. However, my one caveat is to avoid any risk of personalising the information to ones own specific case, thus risking an alarmist bracketing of symptoms with a subjective 'reading' towards the severest category.
I would advise here that the browsing or search within the SI should be cross-checked against the latest diagnosis of a specialist faculty physician, your lung consultant, hopefully allaying any conclusion to the worse case scenario. BE seems to be edging its way into the awareness threshold of more and more GPs who may or may not consult the SI, but at the very least should refer you to a consultant if there is any anxiety about severity.
Interesting - I did the test and it seems to confirm what I have been told - the top end of moderate. Luckily I have not had to be in hospital but have good support from GPs and consultant.
Some how I dout GP Conslutants AS ever seen it .... think more we know the more we can hold them to account for our care.
Palliative v proactive
My new lung doctor said I don’ have bronchiectasis yet i have enlarged airways .... yet under rules if you have enlarged airways you have bronchiectasis.
But don’t think you can discharge someone from lung clinic IF they have bronchiectasis but you can IF they don’t.
My consultant has already told me that my condition is severe and there is nothing else he can do, especially as I also have pulmonary fibrosis and pulmonary hypertension as well as other heart problems. My cardiologist has said more or less the same. Lung chap is seeing me in October unless I get worse and is available by phone, cardiologist will see me in two years unless I am more unwell. Since I am 74 and on the whole reckoned to have had a life expectancy of 60ish I reckon I am doing reasonably well. I try to concentrate on the things I can do and not the things I can't. I love being near my grandchildren and yesterday was able to help with 3 year old who was away from nursery with earache. A lovely cuddly afternoon and we both felt really useful and little one was happy to be with Grandma too!
Yes Jeff, there are grey areas about GP knowledge of BE, even lung consultants as you seem to imply. Doubtless you are familiar with the Chest, Heart and Stroke, Scotland booklet Living With Bronchiectasis, which I always like to champion here online. It makes the definition of BE quite clear and unambiguous (pp.10-13 New version), as well as the test and definitions applicable to a correct diagnosis. As you say Jeff, the more we know the more we can hold professionals to account. Not in a confrontational manner but simply by politely reminding them that there are sources of knowledge which are reliable and accessible.
If there is a Bronchiectasis patient support group nearby even better, because these groups are empowering and fight for convincing definitions of BE. I am fortunate to be a member of one such group, but Health Unlocked has to be first class as well in giving the opportunity for brilliant advocates such as Cofdrop and her friends to inspire us by real life experience of our common condition. You too Jeff for alerting us to the Severity Index.
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Bronchiectasis
Bronchiectasis
Bronchiectasis
