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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Anna
Rattu
a.rattu@soton.ac.uk
Prof
Graham
Roberts
g.c.roberts@soton.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
Chronic lower respiratory diseases
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Development of a quality of life questionnaire for children and adolescents with severe asthma.
300 million people worldwide live with asthma. 1 in 20 people with asthma have severe, or harder to treat, asthma. Severe asthma can dramatically affect the lives of patients and their families and put pressure on healthcare services. The impact of severe asthma on children and adolescents in particular is not well understood, making treatment and management of symptoms challenging.
We aim to develop a questionnaire to measure how severe asthma affects young people’s everyday life, also known as ‘quality of life’ (QoL). The answers to the Paediatric Severe Asthma Questionnaire (PSAQ) will help doctors give the right support and treatment for patients to manage their asthma. The questionnaire will also allow young people to share their experiences of living with severe asthma and have a voice in the decisions about their treatment and care.
This study will involve children (10-17 years), and parents of children with severe asthma (6-17 years). Recruitment will be from secondary asthma clinics. Patient organisations such as European Federation of Allergy and Airways Diseases Patients' Associations and European Lung Foundation will provide publicity to support recruitment.
We will utilise a multi-stage process to develop the PSAQ:
i) interviews and group discussions with children and parents (20-40 participants) to elicit:
• de novo QoL deficits for paediatric severe asthma;
• views about the suitability of the adult Severe Asthma Questionnaire for children.
ii) generate a list of ‘candidate’ questions for the novel questionnaire.
iii) field testing survey to select questions for the prototype PSAQ (100 participants).
iv) interviews to test the prototype PSAQ for relevance, wording, and comprehensiveness (20-40 participants).
v) interviews to pilot refined PSAQ (10-20 participants).
vi) survey to test whether the PSAQ is ‘valid’ i.e. good at measuring QoL (200 participants).
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cross-sectional;
You can take part if:
You may not be able to take part if:
• Patient participant, or parent/carer of patient with other significant long-term medical condition (except hay fever, eczema, or food allergy). • Lack of informed consent/assent, and/or lack of parental consent where appropriate.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Prof
Graham
Roberts
g.c.roberts@soton.ac.uk
Anna
Rattu
a.rattu@soton.ac.uk
More information about this study, what is involved and how to take part can be found on the study website.
The study is sponsored by University of Southampton and funded by European Commission .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 53659
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