TY - JOUR
T1 - Development and validation of a new tool to assess quality of decision-making by older children and parents about research participation
AU - Moe-Byrne, Thirimon
AU - Knapp, Peter
AU - Coleman, Elizabeth
AU - Martin-Kerry, Jacqueline
AU - Sheridan, Rebecca
AU - Graffy, Jonathan
N1 - Data Availability:
Materials will be made available upon request to Peter Knapp ([email protected]).
PY - 2025/1/1
Y1 - 2025/1/1
N2 - 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.
AB - 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.
KW - Children and Young People
KW - Decision Making Questionnaires
KW - Multimedia
KW - Psychometric
UR - https://www.scopus.com/pages/publications/85204373333
U2 - 10.1016/j.pec.2024.108417
DO - 10.1016/j.pec.2024.108417
M3 - Article
C2 - 39303505
AN - SCOPUS:85204373333
SN - 0738-3991
VL - 130
JO - Patient Education and Counseling
JF - Patient Education and Counseling
M1 - 108417
ER -