Research shows patients with severe asthma are misunderstood


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People living with a severe form of asthma are not receiving the support they need because the condition is not taken seriously enough, according to new research.

Psychology experts at De Montfort University Leicester (DMU) have spoken with patients at a specialist clinic for severe asthma about their experiences, as part of a wider project led by healthcare professionals at Glenfield Hospital (University Hospitals of Leicester NHS Trust) and University of Leicester (UoL).

HLS - Severe Asthma Story

They found the widespread public opinion that asthma is a mild, non-life-threatening condition has created obstacles in the care for patients living with a chronic form.

The findings were collated by Lindsay Apps, a senior lecturer at DMU and practitioner health psychologist, Nicky Hudson, professor of medical sociology at DMU.

Lindsay said more needs to be done to help the patients who have chronic asthma.

“Our research highlighted that there is a common misconception that ‘everybody’s got asthma’ and that is having a negative impact on the patients who have severe asthma,” she explained.

The research is part of a three-year project which aims to develop and test exercise rehabilitation for people with severe asthma. It has been funded by the National Institute for Health Research (NIHR) and led by Dr Rachael Evans, associate professor at UoL and honorary consultant respiratory physician at Glenfield Hospital.

“This work demonstrates how qualitative research can provide a rich understanding of the impact long term conditions have on people's lives,” said Dr Evans.

“This research will influence the next steps developing interventions for people with severe asthma to help them manage their condition and feel better.”

According to the World Health Organisation (WHO), severe asthma is when the condition is difficult to treat and/or resistant to therapies. While less than 10% of people with asthma suffer from this critical condition, it costs the NHS more than 50% of the money spent on patients with asthma in total.

“If uncontrolled, severe asthma is not treated it can be life-threatening but not many people realise that,” continued Lindsay. “There needs to be more public awareness and we need to see more social support for patients. It would also be useful to have clearer clarification on the difference between mild asthma and severe asthma.”

Asthma is a common lung condition that causes occasional breathing difficulties due to swelling of the breathing tubes that carry air in and out. It affects people of all ages and often starts in childhood, although it can also develop for the first time in adults. There is currently no cure but there are treatments that can help keep the symptoms of common asthma under control.

Asthma attacks are the result of worsening of symptoms including breathlessness, a tight chest, coughing and wheezing. Statistics show that three people die from them every day in the UK.

All of the patients included in the study had been registered with the severe asthma clinic for at least six months at the time of participation. Most are on significant doses of oral and/or inhaled steroids to manage their symptoms.

“Participants described a genuine fear and panic that they feel in anticipation of their next asthma attack” said Lindsay. “Some even avoid going on holiday because they worry they won’t cope with the change in climate or the flight.”

Patients also spoke about their inability to take part in everyday activities – such as walking the dog or playing with their children. Others said they felt they had to hide their symptoms at work to avoid irritating their colleagues.

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“We need to make more people aware of how severe this condition can be – including patients themselves,” added Lindsay.  “Self-management is key for patients living with a long-term illness. The NHS offers education and support for people with diabetes and their friends and family, so why don’t we offer the same for severe asthma?

“We’d like to see more research programmes developing patient care packages.”

Prior to joining DMU in 2017, Lindsay worked as a health psychologist in the respiratory department at Glenfield Hospital. Her research looks at the experience of chronic illness and self-management programmes, as well as the development of complex interventions for those living with chronic conditions. 

Her latest paper documenting this study, titled ‘Patient perceptions of living with severe asthma: Challenges to effective management’, has been published in The Journal of Allergy and Clinical Immunology here.

Posted on Tuesday 14th January 2020

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