A breath of fresh air in approaches to ‘breathlessness’

It is increasingly common for people to live with several chronic conditions and a number of these may give rise to the same symptom. To help improve people’s quality of life, we need to identify the possible sources of the symptom and treat them appropriately, rather than following the more traditional route of treating the underlying disease.

Why is this? Well, firstly, patients present with symptoms, not with diseases. Secondly, having a symptom-based approach allows us to discuss multi-morbidities, as the single symptom experienced by the patient can be caused by more than one underlying condition.

So, what does this mean for how health care services are designed and provided and how can we know which treatments are most valuable to patients?

The LSE and Health Foundation's Star approach aims to help local health services better understand the value of different interventions by looking at comparative costs, and benefits at individual and local population level. The tool enables these comparisons to be made even when some data is lacking, as a facilitated discussion to build consensus takes clinicians, patients, carers and commissioners through a process to estimate comparative value of different interventions

In the early stages of developing Star, researchers at the LSE analysed the value of interventions for patients with chronic obstructive pulmonary disease and, following on from this groundbreaking work, we worked jointly with IMPRESS (an interest group for those working with respiratory conditions) to try to apply the same Star approach to interventions for treating breathlessness.

Long-term disabling breathlessness is important but often overlooked as a symptom and, as researchers, we saw potential in looking at care from the perspective of a symptom rather than a condition, as we normally do. Then we started working on it and immediately found ‘blind-spots’ in the research literature.

For example, we couldn’t find the number of adults in England who are breathless. We could only estimate it from a few studies from other countries, which suggest that long-term breathlessness affects about 10% of the general population. Despite how common it is, breathlessness is mentioned as a reason for visiting the doctor in only about 1% of recorded GP consultations in the UK. What we don’t know is whether this is because it is not noted by primary care staff, or that patients under-report it as a symptom.

Cost-effectiveness of interventions for breathlessness seems another evidence-free zone and, thus, no clinical guidance is currently available. This means that treatment and provision of services for breathless patients can be based on precarious and partial information. Patients can be partially or wrongly diagnosed and, consequently, inappropriately treated.

Through our work, rather than using the Star approach for an area where there was so little data to work with, we have developed a clinical algorithm for helping clinicians assess a patient to find the possible underlying cause or causes of their breathlessness. This algorithm is accompanied by some Breathlessness IMPRESS tips for clinicians, patients, commissioners and researchers, supported by the best evidence available that we could find. We’re also doing further research to understand the full extent of breathlessness in the UK.

More generally, the uncertainties that we’ve faced throughout this work suggest that a new approach to evidence-based medicine is needed. The classic approach of evidence-based medicine – which assumes there is a single diagnosis to explain a particular symptom and that an evidence-based treatment pathway can be followed – seems to be questionable.

It’s time to do some real world thinking about how we can best treat real people, such as those with breathlessness, who may have multiple symptoms and conditions.

Chiara is a research assistant in the Department of Management at the London School of Economics.