Development and validation of a new tool to assess quality of decision-making by older children and parents about research participation

Moe-Byrne, Thirimon, Knapp, Peter, Coleman, Elizabeth, Martin-Kerry, Jacqueline, Sheridan, Rebecca and Graffy, Jonathan (2025) Development and validation of a new tool to assess quality of decision-making by older children and parents about research participation. Patient Education and Counseling, 130. ISSN 0738-3991

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Abstract

Objective: Effective decision-making is crucial for children and young people's trial participation, but specific tools to measure it are lacking. The TRECA (TRials Engagement in Children and Adolescents) Decision-Making Questionnaire (DMQ) was developed to fill this gap and has been evaluated for reliability and validity. Methods: We created the TRECA Decision-Making Questionnaire, based on similar measures for adults, and recruited participants through seven Studies-Within-a-Trial (SWATs). Participants were randomly assigned to receive trial information either as a printed Participant Information Sheet or Multimedia Information, or both, and asked to complete the DMQ. We calculated item completion rates, item-remainder statistics and Cronbach's Alpha, and conducted factor analysis.  Results: 549 participants (433 parents/guardians, 116 older children) completed a DMQ. It had high completion rates and internal consistency (Alpha = 0.88 for parents/guardians and 0.84 for older children) and moderate to high inter-item correlations. The DMQ had a single factor accounting for 53 % of variance.  Conclusions: The TRECA DMQ is a useful tool for evaluating research participation decisions in older children, as well as parents and guardians. Practice implications: Our study suggests that the TRECA DMQ can be used to assess the quality of decision-making about trials in parents, guardians and older children.

Item Type:	Article
Additional Information:	Data Availability: Materials will be made available upon request to Peter Knapp (Peter.knapp@york.ac.uk).
Uncontrolled Keywords:	children and young people,decision making questionnaires,multimedia,psychometric,medicine(all) ,/dk/atira/pure/subjectarea/asjc/2700
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School
Related URLs:	http://www.scopus.com/inward/record.url?...
Depositing User:	LivePure Connector
Date Deposited:	26 Jan 2026 15:30
Last Modified:	26 Jan 2026 15:30
URI:	https://ueaeprints.uea.ac.uk/id/eprint/101726
DOI:	10.1016/j.pec.2024.108417

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