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Children's and caregivers' participation in the development of paediatric core outcome sets: a cross-sectional
Ruobing Lei1,2, Janne Estill3,4, Haiyun Wang2,5
1Chevidence Lab of Child & Adolescent Health, Children's Hospital of Chongqing Medical University, Chongqing, China.
Insights
Over half of paediatric core outcome sets (COS) included children and caregivers. Strategies are needed to improve the inclusion of children
Area of Science:
- Paediatric research methodology
- Patient and public involvement in healthcare research
Background:
- Core Outcome Sets (COS) are crucial for standardizing outcomes in clinical trials.
- Ensuring meaningful participation of children and caregivers in COS development is essential for relevance and applicability.
Purpose of the Study:
- To evaluate the extent and nature of children's and caregivers' participation in the development of paediatric Core Outcome Sets (COS).
- To identify facilitators and barriers to children's and caregivers' involvement in COS development.
Main Methods:
- Systematic review of paediatric COS, supplemented by a search of the Core Outcome Measures in Effectiveness Trials database.
- Descriptive and thematic analysis of included COS characteristics and participation methods.
- Two-step assessment of participation degree: consideration in outcome list formation and integration in determining outcome importance.
Main Results:
- 114 paediatric COS were included; 60 (53%) involved children and caregivers.
- Children's and caregivers' views were considered in initial outcome list formation in 29 (48%) of these 60 COS, often via interviews.
- Views were fully integrated in determining outcome importance in 35 (58%) of the 60 COS, commonly using Delphi surveys with consensus meetings; the youngest participants were 7 years old. Patient group engagement was a key facilitator.
Conclusions:
- While over half of recent paediatric COS development involved children and caregivers, varying degrees of participation were observed.
- Specific strategies need to be developed and implemented to enhance and ensure robust children's and caregivers' participation in future COS development.
Objectives:
This study aims to address the status of children's and caregivers' participation in the development of paediatric core outcome sets (COS).
Methods:
We included all paediatric COS from a previous systematic review and searched the Core Outcome Measures in Effectiveness Trials database to 26 February 2024 for recent paediatric COS. We used descriptive and thematic analysis methods to present the characteristics of the included COS and to describe children's and caregivers' participation in the development, including any facilitators and barriers. We assessed the degree of participation of children and caregivers in two steps: by rating whether their views were considered in forming the outcome list (yes/no) and then whether their views were integrated in determining the most important outcomes (fully integrated/partially integrated/not integrated).
Results:
A total of 114 paediatric COS were included. 60 (53%) COS involved children and caregivers in the development process. 29 (48%) of the 60 COS considered children's and caregivers' views in forming the initial outcome list, which was most often conducted by interview (n=12 of 29, 41%). Regarding determining the most important outcomes, 35 (58%) of the 60 COS fully integrated children's and caregivers' views, and the most common method was the Delphi survey with consensus meeting (n=29 of 35, 83%); the youngest child participants were aged 7 years. The most frequently mentioned facilitator of children's and caregivers' participation was the engagement of patient groups or organisations.
Conclusion And Relevance:
We evaluated the degree of children's and caregivers' participation in the development of COS and found that strategies to promote children's and caregivers' participation should be constructed.
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