Have your say to help improve the lives of young people with severe asthma

300 million people worldwide live with asthma. 1 in 20 people with asthma have severe asthma. Severe asthma is harder to treat. It can dramatically affect the lives of people living with it and their families. It can also put pressure on healthcare services. The impact of severe asthma on children and teenagers in particular is not well understood. This makes it challenging to treat and manage symptoms. Researchers want to change this and help young people to get better support. We need the help of young people to enable them to do this.

Researchers at the University of Southampton are developing a questionnaire to find out how severe asthma affects young people’s everyday life, also known as ‘quality of life’. The answers to the Paediatric Severe Asthma Questionnaire (PSAQ) will help doctors give the right support and treatment for patients to manage their asthma.

“We now have a number of therapies for children and teenagers with severe asthma but these only work in some patients. The Paediatric Severe Asthma Questionnaire will help us to understand how young people are affected by their asthma so we can treat patients with the right biological therapy for them,” explains Professor Graham Roberts, consultant in paediatric allergy and lead for the study.

The questionnaire will allow young people to share their views and experiences of living with severe asthma and have a voice in the decisions about their treatment and care. “Young people are not little adults, we have different needs and interests. What is important for good quality of life for an adult may not be the same as for a child or a teenager,” comments Freja Anckers, youth patient advocate for the study.

The University of Southampton invites children and adolescents with severe asthma and their parents or carers from across the world to take part in this study. This will help to develop the new questionnaire and to influence healthcare in the future. To take part, please visit: https://southampton.qualtrics.com/jfe/form/SV_ezmQ20aHIjVaWV0, or email severeasthma@soton.ac.uk.

The project is supported by the Innovative Medicines Initiative 2 (IMI2), a joint undertaking of the European Commission and the European Federation of Pharmaceutical Industries and Associations (EFPIA).