All aspects of breathlessness

Millions of people worldwide suffer from breathlessness.(1) This debilitating and distressing problem results from all sorts of illnesses – bronchitis, asthma and heart failure, to name just a few. Yet no single measurement tool can assess all aspects of a person’s breathing difficulties, making it hard to ensure they receive the best treatment. Researchers are developing a new questionnaire to put this problem right.

What's the problem and who does it affect?

Breathlessness blights the lives of millions

The long list of illnesses that can cause breathlessness includes asthma, bronchitis, emphysema, heart failure, cystic fibrosis and interstitial lung disease. Many of these illnesses are both common and devastating. They affect 6 million people in the UK, 500 million worldwide.(2)

Breathlessness has far-reaching effects on many aspects of people’s lives – causing physical difficulties and damaging emotional well-being. The intensity of the symptom varies, as does the type of discomfort – one person’s chest may feel tight, for example, whereas another may feel like they can’t get enough air.

People also differ in how unpleasant they find their symptoms and how well they cope. Some experience feelings of fear, panic and helplessness, which can harm their way of life – causing, for example, an unhealthy avoidance of physical activity.

Doctors have no straightforward way to assess all the different aspects of breathlessness. Often only the intensity is measured. Its effect on people’s emotional well-being is regularly overlooked. Failing to capture the whole experience during assessment may mean large numbers of people are receiving inadequate treatment.

What is the project trying to achieve?

An all-encompassing questionnaire on breathlessness

The project team has already devised a new questionnaire, called the Dyspnoea-15 Questionnaire. Dyspnoea is the medical term for breathlessness – the sensation of discomfort when breathing.

The questionnaire is the first of its kind to cover all aspects of breathlessness. It assesses the physical sensation – the intensity and type of breathlessness. Importantly, it also explores how unpleasant the experience is – how it affects emotional well-being.

In this project, researchers are testing the validity and reliability of the new questionnaire. Three hundred people are participating in the study. They all have breathlessness resulting from chronic obstructive pulmonary disease (chronic bronchitis or emphysema), asthma or interstitial lung disease (some 200 different disorders characterised by inflammation and scarring of the lungs).

What are the researchers' credentials?

The Project Leader, Janelle Yorke, has spent many years assessing the multi-dimensional nature of both breathlessness and pain. Ms Yorke began developing the MDDQ questionnaire when studying for her PhD. The importance of this work has been recognised by a major national award from the Royal College of Nursing.

Ms Yorke’s validation of the MDDQ questionnaire will be supervised by Professor Paul Jones, who has international standing in the field of breathlessness and the design of questionnaires. This project will involve important collaborations with Dr Shakeeb Moosavi and Dr Carol Haigh. Dr Haigh has experience in teaching and researching the field of pain and Dr Moosavi has published widely on his research into the assessment of breathlessness and the physiological mechanisms that cause it.

Who stands to benefit from this research and how?

Capturing the whole experience

If the new breathlessness questionnaire – the MDDQ – shows acceptable levels of validity and reliability, then the project team will make it available for free use by all health care workers and researchers around the world.

The questionnaire is designed to give valuable information on the severity and nature of a person’s physical symptoms. Importantly, it also highlights potential damage to their emotional well-being, by assessing how unpleasant they find their symptoms. Never before has a single tool given such an all-round assessment of how breathlessness affects people.

Researchers hope that the questionnaire will benefit everyone who suffers from breathlessness, no matter what illness they have. Large numbers of people may therefore benefit. Half of hospitalised people suffer from breathlessness.(3) In total, around six million people in the UK alone have diseases that cause breathlessness.

Use of the questionnaire will help ensure that people with different types of breathlessness all receive the best treatment for them. It could also prove invaluable in the development of better therapies.

References

1. World health organization (Geneva). The World Health Report 2000. Health Systems: improving performance. ISBN 92 4 156198X; www.who.int/whr/2000/en/whr00_en.pdf

2. British Thoracic Society. The Burden of Lung Disease (2nd Edition) 2006. Available from http://www.brit-thoracic.org.uk

3. Desbiens NA, Mueller-Rizner N, et al. The symptom burden of seriously ill hospitalized patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcome and Risks of Treatment. J Pain Symptom Manage 1999; 17:248-55.