Gaining patients’ perspectives on respiratory diseases

Two researchers describe how including patient input in their study provided valuable insights

Respiratory diseases are a major problem in primary care and acute medical settings in health systems across the world. We recall working on respiratory wards as junior doctors during the winter months and coming face-to-face with the devastating effects that chronic and acute respiratory illnesses have on patients, families, and health providers. Although most physicians are aware of the severity of respiratory illnesses for our patients, it is much more difficult for us to grasp the collective impact that morbidity and mortality from respiratory diseases have on a health system as a whole.

We have previously explored mortality trends from cancers and circulatory diseases in the UK, and in comparison to other European nations. [1,2] We have also previously assessed the changing trends in mortality from individual respiratory diseases such as idiopathic pulmonary fibrosis (IPF) and pneumonia. [3,4] Whereas the UK has made improvements in mortality rates for circulatory diseases in the past 30 years, with rates at least as good as many of our European counterparts, we observed greater rates of mortality from IPF and pneumonia in the UK compared to other European nations. We were surprised and somewhat unsatisfied to report these differences and wondered whether it could be related to the rigour and comprehensiveness of our death certification process. This was purely speculative, however, and we felt it warranted further exploration.

We are not the first to observe this difference. Previous studies have highlighted that the UK has a relatively high mortality related to Chronic Obstructive Pulmonary Disease (COPD). [5] In our previous work we have identified higher rates of mortality from IPF and pneumonia. We wanted to find out whether the same is true for the UK when looking at a broad group of respiratory diseases. This question is relevant as previous work has suggested that almost all respiratory diseases fall within the definition of amenable mortality, a measure which may be used to assess health system performance. [6] We have seen, for instance, improvements in outcomes for patients with acute ST-segment elevation MI and for patients who have had a stroke if they present to a PCI centre or hyperacute stroke unit, respectively. We also know that a patient with COPD presenting with an exacerbation has better outcomes if seen by a respiratory physician. Is this true of other respiratory-related conditions?  

Our study looked at the overall trends in respiratory-related mortality in the United Kingdom compared to other similar health systems. We found that during a 30-year period from 1985 – 2015, the United Kingdom had higher rates of respiratory-related mortality compared to other European nations, Australia, Canada and United States. While the overall rates in respiratory-related mortality decreased in men, for women there was almost no change in respiratory-related deaths over the three decades.

We know the limitations of this type of investigation and we have been careful throughout the process to avoid speculative suggestions in our findings. We felt it would help usthe investigatorsas well as the general readership if we asked a panel of patients for their views on our results. This was a new venture for our group and we received insightful responses. Our panel of patients suggested that poor adherence to medical therapies and management regimens may be, in part, to blame for poor outcomes. While there is significant international variation in patient compliance to certain treatment regimens, the evidence suggests that the UK is not an outlier in this respect. [7] However, with the NHS under pressure there is less opportunity for clinicians to maintain a dialogue with their patients about the value of treatment and therefore provide optimal conditions for adherence. Future work may attempt to address this question as it applies to patients with a variety of chronic respiratory conditions. Our patient panel also made a prescient point about subtypes of disease. While we attempt to further characterise and phenotype particular sub-categories of respiratory diseases, it is unclear how much of, or how accurately, this knowledge is translated into environments where the majority of respiratory diseases are being managed, for example, in primary care or in acute admission units.

Taken together, these data should be considered as an opportunity rather than consternation. We were pleased to see that along with cardiovascular disease, lung health was a clinical priority in the NHS 10-year plan as we believe  that the UK is lagging behind its European counterparts more in respiratory disease than in other areas [8]. This should therefore be seen as a clarion call to provide respiratory physicians and to give all clinicians the resources needed to tackle this diverse group of conditions that account for a high degree of our workload.

There is more to be done  to fully explain the differences that we have observed. Next we intend to use other administrative data to better understand the system differences between UK and other countries. While environmental change, pollution, and smoking are common considerations, we are also keen to assess other potentially modifiable features such as health related behaviours, or social determinants, on outcomes from respiratory diseases.

Justin D Salciccioli, resident and clinical fellow in medicine, Department of Medicine, Mount Auburn Hospital, Harvard Medical School, Cambridge, USA

Dominic C Marshall, core medical trainee and honorary clinical research fellow, Oxford University Clinical Academic Graduate School, John Radcliffe Hospital, Oxford, UK

Competing interests: See research paper


  1. Marshall, DC, Webb, T, Hall, R, Salciccioli, JD, Maruthappu, M, Ali, R (2016) Trends in UK regional cancer mortality 1991 – 2007. British Journal of Cancer. 114(3); 340 – 7.
  2. Hartley, A, Marshall, DC, Salciccioli, JD, Sikkel, M, Shalhoub, J, Marutthapu, M. (2016) Trends in mortality from ischaemic heart disease and cerebrovascular disease in Europe: 1980 – 2009. Circulation. 133(20); 1916 – 26.
  3. Marshall, DC, Salciccioli, JD, Shea, BS, Akuthota, P (2018) Trends in mortality from idiopathic pulmonary fibrosis in the European Union: an observational study of the WHO mortality database from 2001 – 2013. European Respiratory Journal; 51(1).
  4. Marshall, DC, Goodson, RJ, Xu Y, Komorowski, M, Shalhoub, J, Maruthappu, M, Salciccioli, JD (2018). Trends in mortality from pneumonia in the European Union: a temporal analysis of the European Detailed Mortality Database between 2001 and 2014. Respiratory Research; 19(1):81.
  5. Murray CJL, Richards MA, Newton JN, et al. UK health performance: findings of the Global Burden of Disease Study 2010. Lancet 2013;381:997-1020. doi:10.1016/S0140-6736(13)60355-4.
  6. Nolte E, McKee M. Measuring the health of nations: analysis of mortality amenable to health care. J Epidemiol Community Heal 2004;58:326.
  7. Cerveri, I., Locatelli, F., Zoia, M. C., Corsico, A., Accordini, S., & De Marco, R. (1999). International variations in asthma treatment compliance: the results of the European Community Respiratory Health Survey (ECRHS). European Respiratory Journal, 14(2), 288-294.
  8. Web URL: