Welcome to Futures, Marc. You have a lot of experience in respiratory infection, both as a clinician and a researcher. Before we get in to the detail of the network, could you start by giving us a little introduction to NTM?
Non-tuberculous mycobacteria, or NTM for short, are a group of bacteria that are not generally problematic for healthy people. They are usually found in soil or water and although people can carry these bacteria in their lungs without a problem, they can cause significant symptoms and require treatment, particularly when someone has an underlying long-term respiratory condition.
This treatment is not always straightforward as the medication can cause a lot of side effects, needs to be taken for months and months, and is not always fully-effective. NTM patients are also often older and on other medication with which the anti-NTM drugs can interact. So if you were to compare the treatment to that needed for TB, I generally think of it as being more complicated – and in many ways similar to that for drug-resistant TB.
I’ve mentioned pulmonary NTM as it is the commonest form of disease, but it is worth remembering they can also cause problems in the skin, and other body sites; as well as occasionally presenting as disseminated, systemic disease.
NTM may be unfamiliar to some of our readers. How big a problem is it in the UK?
That is quite a tricky question to answer. In simple terms NTM pulmonary disease is less common than TB in the UK – though probably not by much. While it is reasonably easy to quantify how much TB we have (as it is a notifiable disease that requires treatment when it is first detected), NTM is a chronic illness where multiple positive cultures are usually needed before treatment is started. Therefore, we need to distinguish between the number of mycobacterial isolates sent from local laboratories to the UK Reference Labs each year, and the number of people who have positive NTM cultures and are unwell due to the infection. This is not necessarily straightforward, and so services and labs will often report the prevalence of NTM infections rather than the incidence of disease each year due to NTM.
Guidelines to manage NTM, including those published by BTS, have recommended using a standardised definition of pulmonary disease due to NTM (the ATS/IDSA 2007 definition of NTM, which includes not just repeat isolation of the NTM but also symptoms and radiological changes consistent with disease).
NTM is no different from other illnesses in that we need good population data to be able to plan, deliver and evaluate the services we provide to patients. Adopting a standardised definition has been really helpful in enabling us to start to do this; and so understand more about the disease.
Has there been a rise in numbers?
There is no doubt that we have seen the prevalence of NTM rise in recent years. This is all around the world; and so I don’t think we can put it down to better laboratory detection or an increased awareness of NTM, though these are likely to contribute to some extent. There are lots of theories to explain why the rise is occurring, many of which include people, who are living longer with chronic lung disease, encountering more NTM in their environment.
Although we need further information before we can be fully explain the rise, it feels important for patients and services that we react to it and share knowledge and expertise now.
You have noted that good data relies on accurate diagnoses. How can making a diagnosis be improved?
Whilst a lot of patients with NTM will have been identified by their medical teams who are managing their other conditions such as COPD, bronchiectasis or Cystic Fibrosis, there are some people who remain undiagnosed for several years. This can occur in both primary and secondary care. Common scenarios that should make one think of NTM are when there is non-resolution of infection, or where a patient experiences recurrent exacerbations despite often multiple courses of antibiotics.
It is vital we engage with all our colleagues in the multi-professional respiratory team and support them to manage their patients appropriately. This might be through education (recognising the pattern of illness as possibly due to NTM), or giving them the confidence to request diagnostic tests for mycobacteria and send samples to the lab. In this regard the BTS Guidance is very clear on how to investigate possible NTM lung disease.
So if we could move to a situation where colleagues are recognising its presentation and doing the right tests for confirmation, then that would be a big step forward.
What is the NTM Network UK setting out to do?
This is all about improving patient care. I want my colleagues to feel confident identifying and managing their patients. We need to remember that NTM is rare and therefore clinicians are most likely not seeing many cases within a single service. They can be incredibly challenging, and although there is the BTS guidance, as well as a recently- published document by ERS/ATS/IDSA/ECCMID on the clinical management of the more common types of NTM involving the lung, the evidence-base for treatment and care is really quite limited.
I want our patients, and their carers to have all the information they need to take an active role in the decisions about their care. Our patients are often managing other existing illnesses, and the decision about whether to start treatment for NTM infection is not always easy. Balancing the risks and benefits of treatment can be challenging in particular when embarking on long-term drug regimens. Shared decision making gives us the best chance to make a difference to our patients in a way that matters to them, and I am keen to ensure all healthcare professionals know how to access up to date information; or at least know who they can contact to discuss complex cases.
A collaborative, multi-professional approach has been shown to improve the lives of people across all respiratory diseases, and NTM is no exception. NTM Network UK has ambitious plans - we want to improve diagnosis and management, support best practice through guidance and robust data collection systems, engage in strategic level discussion and of course support information for patients.
How are patients involved?
We have patient representation within the Network Management group; but also recognised that there was no specific support for people with NTM, and so helped patients establish an independent group. What is really fascinating is that they have already found that the level of information available for people with NTM is limited – which suggests that many people with NTM disease know little about their condition or how it is managed. More information about NTM Patient Care UK is available here: https://www.ntmpatientcare.uk/
There is so much to be gained from patients and clinicians forming strong clinical networks. This type of disease can be very challenging and people really value trusted sources of information and support that help them to understand their diagnosis and treatment. We hope people are then more able to explain their care and treatment to their family and friends. A paper (in press) explores this in a bit more detail and provides useful recommendations for expanding patient and clinician networks.
What do you need people to do?
We will only ever be as good as the sum of our parts. It would be amazing to see all healthcare professionals who have an interest in NTM infections join the Network. We are keen to encourage all healthcare professionals to get involved.
We are undertaking a national survey to understand more about the provision and care that currently exists. We will be reporting our findings in the coming months and use the results to ensure the Network meets the needs of those involved.
Finally, we would love to see more people visit the website and join the Network!