Patients and carers of someone with severe asthma have been involved across U-BIOPRED's activities via the project's Patient Input Platform (PIP). Members of the PIP have worked with the paper's author, Louise Fleming , and project lead, Peter Sterk, to produce a lay abstract for the paper, to ensure that the findings of the study are also accessible to patients and the public.
LAY ABSTRACT: DESCRIPTION OF THE U–BIOPRED PAEDIATRIC COHORTS
The U-BIOPRED consortium aims to improve our understanding of severe asthma and identify distinct groups of asthmatics (phenotypes). The identification of phenotypes can help to decide which treatments may be most effective in which group of patients and predict long term outcomes. In order to define these phenotypes information about factors which are important when considering asthma, including asthma control, lung function (blowing tests) and measures of inflammation, are collected. Usually a limited number of items are analysed, however U-BIOPRED is taking a novel approach by combining these measures with large amounts of data obtained from analysis of samples including sputum (phlegm), blood, exhaled breath, urine and throat swabs. Central to this process has been the recruitment of patients with asthma. In this paper we report on the characteristics of the paediatric cohorts and how asthma affects the lives of children with asthma and their parents.
Four groups of children and young people were recruited from 6 centres (London, Southampton, Manchester, Amsterdam, Bern and Copenhagen). All the children had been under follow up in these centres for at least six months and were only included in the study if both the child and the parent(s) were happy to participate. The four groups were:
- School aged children (aged 5-17 years) with severe asthma – lots of symptoms, frequent asthma attacks or reduced lung function
- Mild to moderate school aged asthma – well controlled asthma
- Pre school aged children (1 – 5 years) with severe wheeze – lots of symptoms (wheeze, cough, breathlessness) or frequent attacks
- Mild to moderate pre school wheeze – well controlled symptoms
Children with severe asthma and pre-school wheeze had poor control despite lots of asthma treatment, including high doses of inhaled steroids (500mcg per day or more of fluticasone or equivalent for school aged children and 200mcg per day or more for pre-school children) and other preventer medications (such as long acting beta agonists, montelukast or theophylline) whereas the mild to moderate groups were well controlled and prescribed a low dose of inhaled steroids and no more than one other preventer medication.
Why were these groups selected?
The children were divided into different age groups as asthma in younger children (usually called pre-school wheeze) can be very different to asthma in older children and adults. Asthma treatments are much less effective in this age group. It is also difficult to know which of these children will continue to have asthma when they are older. Very few asthma studies include young children. There is a huge unmet need in this age group in terms of our understanding of the type of asthma that they have and finding effective treatments, which is why we wanted to include these children in the U-BIOPRED study.
For each of the age groups we recruited children with severe disease and also those with mild to moderate asthma. This was done to help us understand more about severe asthma and how it is different from milder forms of the disease.
At the study visit, children and their parent(s) were asked lots of questions about their asthma, exposure to second hand smoke, other allergic diseases (such as eczema and hay fever) and whether other family members had asthma.
They completed questionnaires about asthma control and how asthma affects their life. They participated in a series of assessments and samples were collected. These samples will be analysed in the future and combined with the clinical data that are presented in this paper.
301 children and their parents agreed to participate and 271 completed this first part of the study. The children in the two severe groups had more asthma attacks and more symptoms than the mild to moderate groups. Almost a fifth of those with severe school aged asthma had previously been admitted to intensive care. They also had worse quality of life scores (both the children and their parents) than the mild to moderate groups. We found that poor asthma control and low lung function have the biggest effect on reducing quality of life in children with asthma.
We also found that most of the children in all groups were allergic (atopic) and it was common to have other allergic diseases such as eczema and hay fever. Atopy was more common as the children got older.
Lots of the children were exposed to second hand smoke and almost a fifth of children in the severe pre school wheeze cohort had a positive urine test which demonstrated that they had recently been exposed to tobacco smoke.
In this paper we have shown that we have recruited children with severe disease and that there are important differences when comparing the severe groups with children with mild to moderate asthma and pre school wheeze. We can therefore be confident that results obtained from future analysis of the samples are relevant to severe asthma and pre school wheeze.
This work helps us to understand the features of asthma that have the biggest impact for children and their families. Despite high amounts of treatment these children continue to have frequent symptoms and asthma attacks and this has a negative impact of their quality of life.
We hope that combining and analysing all the information and samples that we have collected as part of this clinical study will enable us to find better ways of treating these children leading to improvements in their asthma control and their quality of life.
We would like to thank all the children and their parents who participated in this study.