Decision-Making Involvement and Prediction of Adherence in Youth With Type 1 Diabetes: A Cohort Sequential Study

To assess developmental trajectories of decision-making involvement (DMI), defined as the ways in which parents and children engage each other in decision-making about illness management, in youth with type 1 diabetes (T1D) and examine the effects of DMI on levels of and changes in adherence with age.

Participants included 117 youth with T1D, enrolled at ages 8-16 years and assessed five times over 2 years. The cohort sequential design allowed for the approximation of the longitudinal curve from age 8 to 19 from overlapping cohort segments. Children and parents completed the Decision-Making Involvement Scale, which yields subscales for different aspects of DMI, and a self-report adherence questionnaire. Mixed-effects growth curve modeling was used for analysis, with longitudinal measures nested within participant and participants nested within cohort.

Most aspects of DMI (Parent Express, Parent Seek, Child Express, and Joint) increased with child age; scores on some child report subscales (Parent Express, Child Seek, and Joint) decreased after age 12-14 years. After accounting for age, Child Seek, Child Express, and Joint were associated with overall higher levels of adherence in both child (estimates = 0.08-0.13, p < .001) and parent (estimates = 0.07- 0.13, p < .01) report models, but they did not predict changes in adherence with age.

These data suggest that helping children to be more proactive in T1D discussions, by encouraging them to express their opinions, share information, and solicit guidance from parents, is a potential target for interventions to enhance effective self-management.