Abstract

Objectives

Patients’ time spent receiving care incurs an opportunity cost, which ought to be considered when conducting an economic evaluation from a societal perspective. Instruments for capturing time-related costs are presently lacking, especially for children and young people (CYP). To address this gap, we developed and pretested the Children and Young People’s Time-Use Questionnaire for use in Economic Evaluation (CYP-TUQEE), producing versions for direct completion by CYP aged 11 to 17 years, and proxy completion by parents/carers of CYP aged up to 10 years.

Methods

The CYP-TUQEE was developed using an iterative process involving scoping reviews, consultation with a Working Group of experts, and pretesting through think-aloud interviews with 20 CYP and 9 parents/carers. This process aimed to produce a comprehensive, adaptable questionnaire that is not onerous to complete by CYP or parents/carers within the target age ranges.

Results

Participants engaged well with the think-aloud process and provided feedback to inform the development of a novel, standardized instrument to facilitate the collection and inclusion of resource- and time-use data for pediatric economic evaluations. Feedback indicates that the CYP-TUQEE is easy to complete, clear, and ready for additional validation.

Conclusions

The CYP-TUQEE addresses a prominent gap by providing an accessible tool for resource-use and time-use data collection, tailored to CYP. Inclusion of patient time costs can assist in decision making and ensure prioritization of interventions respectful of patients’ time. Future research will involve additional testing of the CYP-TUQEE in a real-world setting for further validation and refinement, and elicitation of a value (‘unit cost’) for CYP’s time.