Insight into children with preschool wheeze
Danielle Roe, our Patient and Public Involvement Manager shares the importance of patient insight in the work we do and key findings from the recent survey for parents of children with preschool wheeze.
Wheezing can have a huge impact
Wheezing or whistling in a child’s chest is incredibly distressing for both parents and children. And yet, it is extremely common among children aged 1-5.
Wheezing can have a huge impact on the lives of parents and carers seeking support. We also know that children with preschool wheeze often go onto develop asthma, making the need for research in this area even more apparent. Despite this, treatment options for children with wheeze are limited.
Patient insight
As the go-to charity for parents of children with preschool wheeze, here at Asthma UK we are uniquely placed to hear from people with lived experience about what issues matter to them.
We know that you’re the experts in what it’s like to live with or care for someone with asthma, and it’s this invaluable insight that we use to shape our work. It informs which research we will advocate for, so that there will be better treatments that work for people with asthma.
We’re currently working with a researcher who is proposing trialling a new drug for children with preschool wheeze. As the link between patients, parents, health care professionals and researchers, we can help the scientists who are proposing the treatment to better understand what parents want would want from this.
Key findings from the survey
Most recently, we did this by surveying parents of children with preschool wheeze to ask what they thought of the idea for the clinical trial. We gathered lots of information as part of this and key findings included:
Of parents who currently have a child with preschool wheeze, almost a third have sought care for their child five or more times in the last year
Over two thirds of parents would be very interested or quite interested in trialling the drug
When we asked parents what they’d regard as a good result of being on the trial, the most popular choice was their child having fewer episodes of wheezing. This was followed by children not going onto develop asthma or lung disease.
The survey findings were then complemented by a focus group of parents of children with preschool wheeze to add further rich insights.
We then passed all of this information onto the researcher, who has used it to shape her research proposal.
Your insights have directly shaped how the trial will be carried out, how often the drug might be given, and what will be considered as a successful result of the trial, known as outcome measures.
If you’re interested in finding out about the ground-breaking research that we’re supporting, read more here.
If you’re interested in sharing your own lived experience to help shape our research, why not check out our latest survey? We want to hear from people with difficult to control asthma.
Asthma research is severely underfunded
DID YOU KNOW: Research into respiratory diseases like asthma accounts for just 2% of all the medical research funding in the UK.
This underfunding is exactly why we launched the 2021 Research Appeal...