Patient representatives share their experiences at the 2nd World Bronchiectasis Conference
The 2nd World Bronchiectasis Conference took place from 6-8 July 2017 in Milan, Italy. We attended with members of our bronchiectasis patient advisory group; two of whom have shared their experiences at the conference below.
This was a most enjoyable conference which I was privileged to attend as a patient. Three of us attended as patients; three others were sadly unable to be there in person, but two were able to Skype for our patient advisory group meeting. At this meeting we met with medical staff to take forward the work we have been involved with on the bronchiectasis guidelines, the patient education platform and the patient powered registry. We also discussed the cross-infection recommendations which emerged from the systematic review carried out by James Chalmers in response to the concerns of patients. Thank you, James and team.
I was pleased that one of the conference themes was on ‘Understanding the heterogeneity of bronchiectasis’, since this is important in targeting treatment and designing clinical trials. As patients, we are very aware that there is considerable variability between us, for example in severity and cause (if known). Some of the known causes were discussed (including ruling out cystic fibrosis – which, according to Carlo Castellani, is not so easy!), but still many of us do not know why we have bronchiectasis. The possibility that bronchiectasis may be able to be phenotyped by computed tomography (Harm Tiddens), and that there may be opportunities for preserving lung function in children with bronchiectasis (Anna Mulholland) gave me particular hope for future care.
For a disease in which inflammation is a key component, there was relatively little on anti-inflammatory interventions and prevention of exacerbations, but it seems to me that concentrating on treating chest infections with antibiotics, whilst important, is a stage too late. A notable exception was Mario Scuri who discussed neutrophil elastase as a marker of disease activity and a possible target for intervention. Also Ashwin Basavaraj who spoke on physiotherapy and mucoactive drugs, although I was a little surprised there wasn’t a presentation by a physiotherapist. Lung clearance is a cornerstone for many of us in trying to stay well, but access to respiratory physiotherapists and equipment, if required, is very patchy. The importance of prescribing this was highlighted.
Francesco Blasi’s suggestion – ‘EMBARC – where are we now?’ – that it is time to form a clinical trials network seemed to me excellent. At future conferences I hope there will be the opportunity to bring clinical trials ideas to gauge consensus on what to take forward and to work up the designs, as happens in other fields with advantage.
Annette Posthumus (one of the members of our patient advisory group) and Jeanette Boyd (European Lung Foundation), gave an interesting and wide-ranging presentation on ‘Bronchiectasis Patients in Action – a global perspective’. This nicely illustrated some of the concerns of patients and how proactive many of them are in seeking to improve knowledge and care.
My thanks to the European Lung Foundation and EMBARC for making my attendance possible; to Jeanette Boyd for her kind support and facilitation; to the healthcare professionals who are working to advance knowledge and improve care and, in particular, for seeking a patient perspective; to my fellow patients for their insights, support and companionship; and to the conference organisers for an excellent conference in a great venue.
The main benefit for patients was the announcement that a Patient Passport is being developed in multiple European languages. This document sounds like a driver’s licence (“patient has learned to……”); it sums up medications, is, in some ways, like a contract (“patient is to perform X exercises”) and includes travel information. This innovation is taking place thanks to Dr James Chalmers. His personal hope is that someday a way will be found to detect the enlargement of the bronchial tubes typical of bronchiectasis before it occurs.
At the conference you could see there is activity going on to improve treatments and patients’ outcomes. Results from a couple of clinical trials, for instance, were presented during the conference about inhaled antibiotics and physiotherapy techniques that seemed to reduce patients’ exacerbations.
This year, the role of non-tuberculous mycobacteria (NTMs) in contributing to bronchiectasis was the topic of a whole section of presentations. In the US, NTMs are more widespread among bronchiectasis patients (higher incidence) and the subject of an initiative and forum.
Guillermo Suarez-Cuartin (along with multiple co-authors, Barcelona, Spain) was awarded the Best Rising Star Presentation for their ‘Identification of Pseudomonas aeruginosa Airway Colonization by an Electronic Nose in Bronchiectasis Patients’. Their conclusion: “An electronic nose can accurately identify the presence of airway bacterial colonization in clinically stable bronchiectasis patients, especially in those with Pseudomonas aeruginosa”.
Professor James Chalmers, University of Dundee, UK
One of the highlights of the conference was the way patients became an active part of the meeting. Patients were asking questions during the major conference speeches, mixing with the doctors and other professionals during the breaks, and, as always, working hard with us to develop projects like the upcoming bronchiectasis guideline which aims to improve care for patients with bronchiectasis.
I hope the message our patients take from the meeting is that there are more and more doctors and other professionals in Europe now working with them to try to find new treatments and improve standards of care.