Healthcare utilization and the quality of life of children and adolescents with sickle cell disease.

Abstract

Youth diagnosed with sickle cell disease (SCD) are at increased risk of poor health-related quality of life (HRQOL) due to the complexities associated with this disease. The literature notes that predictors such as pain and poor mental health are associated with increased healthcare access; however, the connection between healthcare use and their overall well-being has been understudied. This study investigates whether healthcare utilization predicts the HRQOL in youth with SCD. Patients completed the Pediatric Quality of Life (PedsQL) 3.0 SCD module, whereas the researcher conducted a retrospective chart review to gather patient characteristics such as emergency room (ER) and hospitalization occurrences over the past 12 months. The study consisted of 150 pediatric patients with SCD, ages 8-17 years old, and their parents. Patients with≥4 ER visits and hospitalizations reported worse HRQOL scores than their respective counterparts. Additionally, a higher frequency of ER visits (P=0.05) and hospitalizations (P=0.005) predicted lower HRQOL scores. Age (P=0.04) also emerged as a significant predictor for both regression models, as increased healthcare access among older patients with SCD was associated with poorer HRQOL. This study found that as youth with SCD require ER treatment and/or hospital admission, they are at increased risk for lower HRQOL, specifically as they get older. Findings suggest that attention should be paid to patients who require more frequent healthcare intervention. Improvement in outpatient care of pediatric patients with SCD may help to mitigate ER and inpatient use.