Stephen Bourke Feature Leaflet Screenshot

New patient-led leaflet created to help people with COPD avoid respiratory infections and flare-ups

Thursday, October 13, 2022

Stephen Bourke spoke to Respiratory Futures about how COPD research during COVID led to the development of a COPD infection control leaflet.

Download the COPD patient information leaflet Learning from the pandemic avoiding COPD flare-ups and hospital admissions

How did the COPD Patient Leaflet come about?

During the pandemic our research team continued their work, adding COVID-19 to the focus on COPD and NIV. We noticed a marked fall in COPD admissions; it was important to know whether patients were worried about attending hospital, and therefore presented late when they were more unwell, or if there was a real reduction in exacerbations due to the infection control measures in place preventing the spread of other respiratory viruses that commonly cause COPD exacerbations.

We captured all admissions with COPD exacerbations during the lockdown and post-lockdown periods. We saw a marked reduction in severe exacerbations requiring admission, which was sustained during both lockdown periods.

There is a meta-analysis from Cochrane in 2011 that showed the effectiveness of simple physical measures to prevent the spread of respiratory viruses, however this research never made it into any COPD guidelines.

Checking the validity of the data

We were keen to show that this wasn't just because people tried to avoid attending hospital, only to turn up when they were dangerously ill. We looked at the proportion of patients needing ventilation and we compared the coded data to our rolling NIV audit data; all discrepancies were resolved by Case Note review. Similarly, we reviewed chest X-rays if there was doubt based on the clinical records. And when we looked at mortality, we looked at both mortality in hospital and mortality in hospital plus 30 days post discharge. If we discharged someone too quickly to try to stop them catching COVID in hospital, they may have deteriorated a few days later.

What was interesting is we found no increase in the need for ventilation among those admitted with COPD exacerbation. If people with COPD exacerbations were terrified to come to the hospital and stayed away if they could, then the proportion turning up in respiratory failure requiring ventilation would have been greater, it was actually slightly lower. Also, there was no increase in mortality, even when mortality in hospital plus 30 days post discharge was included.

Creating practical advice from the research

We translated these findings into the sort of measures patients would find acceptable. We spoke to our infection control team, our patients with COPD and our Patient and Public Involvement group and they took part in the co-development of the leaflet. They told us what information would be helpful and would encourage people to act on the advice.

For instance, one of our expert patients wanted to make it clearer that we're talking about spread of all respiratory viruses, including simple coughs and colds. So that's now in bold print at the very top.

There was a lot of discussion about the adverse effects of lockdown. We didn’t recommend complete shielding; rather we encouraged people to exercise. We advised patients to follow government guidance, but also to be active and keep up social contacts, just to do so safely. The sofa is probably the most dangerous place for COPD patients.

Only at the bottom of the leaflet do we mention social distancing and we gave patients the choice to follow the advice, either all year round, or only in the peak flu season. We did this at the time when government advice faced kickback and a lecturing approach wouldn’t be helpful. We included ‘hands, face, space,’ but used different terms and images. We gave people the freedom to choose and enough information to understand that choice. Patients fed back that the leaflet is easy to read.

How did you disseminate the information?

We went through our local Care and Clinical Commissioning Group and sent out a text message to all registered COPD patients with the link to the document.

We also printed the leaflets as we know mobile delivery disadvantages some patients. However, distributing it through GP’s was problematic.  GP practices are under a lot of pressure; posting these leaflets to all their patients would be challenging. The CCG were interested in employing a company to post the leaflet to all COPD patients, but there were concerns about sharing patient data. It’s sometimes hard to get information to patients, but it remains a work in progress!

Why else is this leaflet important?

The strongest message is that whilst there are no official guidelines on COPD and infection control, we saw a 43% reduction in severe exacerbations requiring admission, which is greater than you can achieve by any individual COPD therapy compared to placebo or optimising all treatment from a baseline level. It's simple advice to follow and in cost terms, could generate a huge saving for the NHS as we approach winter.

There could be another wave of infections and infection control measures might slip if people get fed up and take risks. If people who have a vulnerable loved one knew they could take these actions to protect them, they would.  

What do you plan to do next?

Our nurses give the leaflet to COPD patients they see before they are discharged from hospital to help reinforce the message and the CCG will resend the information this autumn. It’s a team effort and without the contribution of so many colleagues and groups this leaflet wouldn't exist. These things are never done well in isolation - that's the message.