Patient reported outcomes for preschool children with recurrent wheeze

Makrinioti Heidi,Coren Michael,Holden Benjamin,Bush Andrew,Klaber Robert,Griffiths Chris,Blair Mitch,Watson Mando,Keating Emily

doi:10.1038/s41533-019-0120-3

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.

Highlights

Chronic respiratory conditions are major causes of morbidity and mortality in childhood
We found that no Patient-reported outcome measures (PROMs) have been routinely introduced in these countries either[12] There are two instruments attempting to assess the severity of preschool wheeze attacks and the main parental concerns during the episode[13,14] these instruments demonstrate how families feel during acute attacks, they do not capture the changes in quality of their life over time and are not co-designed with families as would a PROM tool[15] a PROM would potentially add significantly in the management of these children
This paper describes the main co-developed personalised outcomes for preschool children with wheeze

Summary

Introduction

Chronic respiratory conditions are major causes of morbidity and mortality in childhood. Such children may have impaired physical, emotional, and general well-being. Their illness and associated stressors can have a great impact on their caregivers, especially when recurrent hospitalisations are required[1]. Recurrent wheeze in preschool children is one of the most common respiratory conditions. Wheezing disorders in toddlers constitute one-third of the presentations of respiratory disorders in this age group and are associated with increased healthcare costs, loss of time from work in parents and impaired quality of life for the carers and/or the family[2,3] The prevalence of preschool wheeze varies between countries. A recently published European study describes the differences in prevalence during the second year of life in nine European countries with UK having the second highest prevalence[4]

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