Identifying common health indicators from paediatric core outcome sets: a systematic review with narrative synthesis using the WHO International Classification of Functioning, Health and Disability

Abstract

Background: Indicators of child health have the potential to inform societal conversations, decision-making and prioritisation. Paediatric core outcome sets are an increasingly common way of identifying a minimum set of outcomes for trials within clinical groups. Exploring commonality across existing sets may give insight into universally important and inclusive child health indicators.

Methods: A search of the Core Outcome Measures in Effectiveness Trial register from 2008 to 2022 was carried out. Eligible articles were those reporting on core outcome sets focused on children and young people aged 0-18 years old. The International Classification of Functioning, Disability and Health (ICF) was used as a framework to categorise extracted outcomes. Information about the involvement of children, young people and their families in the development of sets was also extracted.

Results: 206 articles were identified, of which 36 were included. 441 unique outcomes were extracted, mapping to 22 outcome clusters present across multiple sets. Medical diagnostic outcomes were the biggest cluster, followed by pain, communication and social interaction, mobility, self-care and school. Children and young people's views were under-represented across core outcome sets, with only 36% of reviewed studies including them at any stage of development.

Conclusions: Existing paediatric core outcome sets show overlap in key outcomes, suggesting the potential for generic child health measurement frameworks. It is unclear whether existing sets best reflect health dimensions important to children and young people, and there is a need for better child and young person involvement in health indicator development to address this.

Keywords: Adolescent Health; Data Collection; Epidemiology.

Figure 1

Summary of screening strategy. COMET- Core Outcome Measures in Effectiveness Trial. COS- Core Outcome Set

Figure 2

Stakeholder groups involved in (1) outcome long listing and (2) consensus process by year. Left hand bar represents outcome long listing, right hand bar represents consensus process. CYP- children or young people.

Figure 3

Mean attrition between consensus rounds by stakeholder group, comparing studies including patient and public involvement (PPI) in study design to those without.

Figure 4

Stakeholder involvement in outcome long listing and outcome consensus for all paediatric core outcome sets. Bubble size represents final paediatric core outcome set size. Studies to the left of the y-axis had no stakeholder involvement in the outcomes listing phase as outcome longlists were derived from systematic reviews, or the stakeholder breakdown was not published. CYP- children or young people.