Abstract
Introduction: Many children with sickle cell disease (SCD) experience frequent interactions with the health care system for the treatment and management of acute and chronic disease complications. For many children with SCD, these encounters occur during school. There is limited data available which quantifies the association between health care encounters and disease-related absences among children with SCD. The aims of this study were to 1) quantify disease-related school absences for children with SCD and 2) assess the association between health care encounters and school absences. We hypothesized that health care utilization is associated with increased school absences for children with SCD.
Methods: We conducted a longitudinal study of 101 children with SCD in a large urban pediatric hospital. Upon enrollment, parents completed a baseline questionnaire that assessed their child's health care utilization and school absences in the previous 12-months. The primary independent variables were acute care (number of emergency department visits and hospitalizations), preventive care (number of routine medical and dental visits), and total health care utilization (summation of all encounter types). The primary outcome measure was the number of disease-related missed school days. The covariates consisted of both child characteristics (age, gender, insurance type, parent-reported health status) and parent characteristics (education, marital status, social support, and number other children in household). Multivariate negative binomial regression was conducted to assess associations. Results were expressed as odds ratios (OR) and 95% confidence intervals (CI).
Results: Among children with SCD, the average number of acute care encounters was 3 and preventive care encounters was 9 in the previous 12 months. There was an average of 12 total health care encounters during the same period. Children missed an average of 12 school days attributable to SCD in the past 12 months. Acute care (OR = 1.15, 95% CI = 1.13 -1.17), preventive care (OR = 1.04, 95% CI = 1.03 - 1.05) and total health care encounters (OR = 1.05, 95% CI =1.04 - 1.06) were all significantly associated with disease-related missed school days.
Conclusion: Routine care accounted for three-fourths of the total health care encounters among children with SCD. While vital to the management of SCD, these frequent health care encounters may increase school absenteeism. This is particularly impactful during formative years as this can have long-term effects on the academic and socio-economic achievement of children with SCD. To ensure that children with SCD can stay on par with their peers, while undergoing recommended treatment, supplemental educational instruction and support coordinated across the health care and education systems may be needed. Larger longitudinal studies are warranted to determine the educational consequences of frequent health care encounters for children with SCD.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.