Patient reported outcomes for preschool children with recurrent wheeze

Abstract

Children with preschool wheeze regularly attend UK emergency departments. There is no international consensus on any specific personalised management approach. This paper describes the first attempt to co-design patient-centred outcomes with families. Preschool wheezers’ parents participated in semi-structured interviews and focus-group discussions to air their concerns and identify potential additional support. Fifty-seven families participated in these interviews. From these, themes were defined through qualitative content analysis. Parental experience was mapped to the patient pathway and seven important personalised outcomes were described. These can be used to inform a tool which following further validation could potentially support management of children with preschool wheeze and provide an additional patient focused clinical outcome measure in audit and research.

Final warning on the need for integrated care systems in acute paediatrics

“…The Wheeze & Me initiative showed how multiple health contacts left parents feeling confused, scared and illinformed. 8 Instead, parents will be given knowledge and training to be equal partners in healthcare delivery.…”

“…By using patient and family insights, we will have a system that is actually fit for purpose; that helps families use emergency care when it is genuinely needed and empowers self-management effectively. The Wheeze & Me initiative showed how multiple health contacts left parents feeling confused, scared and ill-informed 8. Instead, parents will be given knowledge and training to be equal partners in healthcare delivery.…”