The relationship of Type 1 diabetes self-management barriers to child and parent quality of life: a US cross-sectional study.

AIM: Families of children and adolescents with Type 1 diabetes experience self-management challenges that negatively impact diabetes control. This study assesses whether self-management challenges are also associated with quality of life (QOL) for children and adolescents with Type 1 diabetes and their parents.

METHODS: Children aged 8-12 years (n = 135), adolescents aged 13-16 years (n = 132) and their parents completed QOL assessments (diabetes-specific QOL from the PedsQL Diabetes Module or the Family Impact Module, both scaled 0-100) and a validated survey of up to six self-management barriers [PRISM; scaled 1 (low) to 5 (high)]. Regression coefficients were calculated to assess the association of self-management barriers with child and adolescent diabetes-specific QOL or parent QOL, including interaction effects to assess the stability of the associations.

RESULTS: Mean duration of diabetes was 4.7 years for children and 6.1 years for adolescents. The majority of children and adolescents did not meet target values for glycaemic control. All barriers but one (Healthcare Team Interactions) were associated with lower diabetes-specific QOL for children and adolescents, as well as lower QOL for parents (all P < 0.05). Barrier scores that were 1 unit higher were associated with diabetes-specific QOL that was 3.7-5.1 points lower for children and 5.8-8.8 points lower for adolescents, as well as QOL that was 6.0-12.6 points lower for parents. Diabetes-specific QOL was most strongly associated with 'Denial of Disease and Its Consequences' for children and with 'Regimen Pain and Bother' for adolescents. Parent QOL was most strongly associated with 'Understanding and Organizing Care'. Associations were stable across numerous demographic and disease factors.

CONCLUSIONS: Single-unit differences in self-management barrier scores are associated with clinically meaningful differences in QOL for children and parents. Interventions specifically tailored to address individual self-management barriers may improve both diabetes control and QOL.