Disparities in Health Literacy and Healthcare Utilization among Adolescents and Young Adults with Chronic or End-stage Kidney Disease

Abstract Purpose Low health literacy adversely affects health outcomes in adults with chronic kidney disease. The current study examined associations between limited/inadequate health literacy and health services utilization among adolescents and young adults (AYA) with chronic or end-stage kidney disease (CKD or ESKD). Design and Methods This was a retrospective cohort study that enrolled patients from both the pediatric- and adult-focused nephrology clinics of a major university hospital. Demographic information, patients' health literacy and numeracy skills (Newest Vital Sign), and health services utilization (emergency department visits, preventable hospitalizations, total hospitalizations, and length of stay in the hospital) were evaluated. A negative binomial regression model for counts tested the association between AYA patients' literacy/numeracy skills and health services utilization. Results The study enrolled 142 participants, 66 (46.5%) patients from adult nephrology and 76 (53.5%) from pediatric nephrology clinics, with a mean age of 20.8 ± 5.60 years (range 12–31). Half of the sample (n = 72, 51%) had limited health literacy skills. Health literacy/numeracy level was not significantly associated with total hospitalizations, preventable hospitalizations, emergency department (ED) visits, or length of hospital stay. However, public insurance/self-pay, minority race, and kidney transplant/dialysis diagnoses were associated with more preventable hospitalizations. Conclusions Among AYA with CKD/ESKD, there were no differences between the low and adequate health literacy groups on health care utilization outcomes when modeling clinical outcomes (total hospitalizations, preventable hospitalizations, ED visits, and length of hospital stay) after adjusting for demographics and disease type. This suggests that other factors warrant consideration in healthcare utilization rates.