Youth and Parent Knowledge and Communication About Major Complications of Type 1 Diabetes

Abstract

OBJECTIVE Previously, we studied clinicians’ and parents’ perspectives about what, when, and how youth with type 1 diabetes (T1D) and parents should be taught about major complications (MC) of T1D. Results showed that this topic creates considerable anxiety among youth and parents, that there is a perceived need to tailor these experiences to each patient’s circumstances, and that there is considerable variability in opinions about appropriate MC education. Prior studies did not measure youths’ or parents’ actual knowledge of complications, how they cope with that knowledge, or how these variables relate to T1D outcomes. The current study addresses these gaps. RESEARCH DESIGN AND METHODS This article reports a cross-sectional study of 151 8- to 18-year-old youths with T1D and their parents in which their knowledge of MC (nephropathy, retinopathy, neuropathy, and cardiovascular disease) was ascertained by structured interview. Family communication about MC was assessed using a questionnaire validated in this study. Regression analyses explored youth age, parent and youth MC knowledge, and positive family communication about MC as predictors of T1D outcomes (hemoglobin A1c, treatment adherence, quality of life, and family conflict about T1D). RESULTS Parental MC knowledge was not associated with any T1D outcome; greater youth MC knowledge predicted better treatment adherence. More frequent optimistic family communication about MC was associated with more favorable status on all outcomes. CONCLUSIONS Optimistic family communication about MC, more so than MC knowledge, predicted favorable T1D outcomes. Longitudinal studies are needed to confirm these associations and to evaluate pertinent psychoeducational interventions.