Professor Miriam Johnson

New clinical syndrome will raise awareness and benefit patients

Miriam Johnson, Professor of Palliative Medicine at Hull York Medical School has led a group of international experts to agree on a new clinical syndrome to help people living with breathing problems.

Professor Johnson, who is Director of the Wolfson Palliative Care Research Centre, at the University of Hull, said:

‘The agreed name is Chronic Breathlessness Syndrome and describes breathlessness which persists despite treatment for the underlying medical condition and as a result causes disability. 

 ‘Traditionally the management of patients with lung, heart and neuro-muscular diseases has focused only on the underlying disease – for example, the emphysema – without routinely looking at the impact that being out of breath over months and years has on patients’ everyday lives, or how that can be helped.

 ‘By recognising this syndrome, we hope to enable patients to share their concerns about their ongoing breathlessness with doctors and nurses and for clinicians to ask patients routinely.

 ‘Better recognition of the problem will help people access treatments for the breathlessness itself, not just the disease. We hope this will help people regain some control and quality of life.

 ‘For instance, this recognition may help a person suffering with this condition to find ways to play with their grandchildren again without being stopped by being out of breath, another might be able to carry out everyday tasks around the home or pursue interests such as gardening, for example.’ 

By recognising this syndrome, we hope to enable patients to share their concerns about their ongoing breathlessness with doctors and nurses and for clinicians to ask patients routinely.

Miriam Johnson, Professor of Palliative Medicine, Hull York Medical School

By ensuring all health professionals can diagnose and treat the condition – this will have a direct impact on a patient’s wellbeing.

 A basic assessment of patients can result in them managing their breathlessness more effectively and can change the threshold at which breathlessness leads to them giving up the things they enjoy doing.

 ‘Asking patients a simple question: ‘What have you given up to manage your breathlessness?’ can make a difference to understanding the issues they face and how improvements can be made,’ said Professor Johnson.

 ‘It is important that, following the classification of Chronic Breathless Syndrome, we make sure that all doctors and nurses caring for these patients, whether in hospital or the GP surgery, are aware of treatments for breathlessness and that those treatments are available across the country.’

 Professor Julie Jomeen, Dean, Faculty of Health Sciences, University of Hull, said:

 ‘We are committed to making a major impact on improving health provision at a local, national and international level.

 ‘Professor Johnson’s work to classify and raise awareness of chronic breathlessness will have significant benefits in the treatment and wellbeing of patients.

 ‘Recognition for this clinical syndrome will enable us to train our students to give the best possible care to those suffering from this debilitating condition.’

Read the paper on the European Respiratory Journal. 

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