Impact of type 1 diabetes mellitus on the family is reduced with the medical home, care coordination, and family-centered care

Abstract

Objectives: To examine whether the medical home, care coordination, or family-centered care was associated with less impact of type 1 diabetes mellitus (T1D) on families' work, finances, time, and school attendance.

Study design: With the 2005 to 2006 National Survey of Children with Special Health Care Needs, we compared impact in children with T1D (n = 583) with that in children with other special health care needs (n = 39 944) and children without special health care needs (n = 4945). We modeled the associations of the medical home, care coordination, and family-centered care with family impact in T1D.

Results: Seventy-five percent of families of children with T1D reported a major impact compared with 45% of families of children with special health care needs (P < .0001) and 17% of families of children without special health care needs (P < .0001). In families of children with T1D, 35% reported restricting work, 38% reported financial impact, 41% reported medical expenses >$1000/year, 24% reported spending ≥11 hours/week caring or coordination care, and 20% reported ≥11 school absences/year. The medical home, care coordination, and family-centered care were associated with less work and financial impact.

Conclusions: In childhood T1D, most families experience major impact. Better systems of health care delivery may help families reduce some of this impact.