Tailoring Resources to Help Children and Parents Manage Type 1 Diabetes [Internet]

Excerpt

Background: The 165 000 US children with type 1 diabetes (T1D) face a lifetime of self-management decisions to delay or prevent complications while maintaining quality of life (QOL) for themselves and their parents. Although efficacious resources exist to support self-management, most children with diabetes struggle with achieving glycemic control targets. Experts recommend family-centered self-management approaches that attend to each family's self-management challenges. Currently, no system-level method exists to identify and address each family's self-management barriers, resulting in ineffective or wasted resources. The validated Problem Recognition in Illness Self-Management (PRISM) tool could be used as part of an intervention to tailor family-centered self-management resources by helping each family and its clinicians identify and address self-management barriers.

Objectives: To assess the impact of family-centered tailoring of diabetes self-management resources on glycemic control, parent and child QOL (primary outcomes), and fear of hypoglycemia (secondary outcome).

Methods: Conducted in partnership with families, clinicians, clinic administration, and advocacy organizations, our pragmatic trial enrolled children aged 8 to 16 years with T1D and their parent(s) at 2 sites. Participating families were randomized to receive either tailored self-management resources (intervention) or usual care. Our intervention (1) used PRISM to identify families' self-management barriers, (2) tailored self-management resources to the identified barrier, and (3) coordinated group-based delivery of the tailored resources over 9 months to optimize convenience, efficiency, and sustainability. We used validated measures to assess A_1c, parent and child QOL, and fear of hypoglycemia during the 12-month intervention period and for the subsequent year. We used mixed effects models with repeated measures of study outcomes over time to examine the intervention's impact.

Results: Among 363 potentially eligible families, 267 (74%) consented to participate. Ultimately, 108 families were randomized to usual care and 106 to receive the intervention. Among the participating children, 44% were aged 8 to 12 years, and 56% were aged 13 to 16 years. About half of the children were female (49%) and 84% identified as non-Hispanic White. Mean diabetes duration was 5.4 years (SD 3.3) and 14% had an A_1c <7.5%. Attendance at intervention group sessions was high, with 69% of families attending at least 3 of the 4 sessions. Our analyses demonstrated no overall intervention effect on A_1c, QOL for the child or parent, or on fear of hypoglycemia during or after the intervention. However, in prespecified subgroup analyses, intervention group teenagers (aged 13-16 years) at 1 site had a significantly better A_1c trajectory in the year postintervention than teenagers who received usual care (mean A_1c was lower by 0.059% [95% CI, 0.11-0.01] per month). At this same site, parents of intervention group children aged 8 to 12 years had a significantly better QOL trajectory during the intervention than parents of those who received usual care (mean parent QOL was greater by 0.61 points [95% CI, 0.05-1.17 points] per month).

Conclusions: Although the intervention did not significantly affect outcomes as hypothesized, findings suggest best practices for the process of delivering self-management resources and that the intervention might improve outcomes in select settings.

Limitations: The trial was conducted at 2 clinical sites, which could limit generalizability of findings.