Medical Complications Among Children and Adolescents with Sickle Cell Disease in Texas Medicaid

Abstract

Highlights: What are the main findings? Younger children had a higher number of documented complications and affected organ systems compared to the older age group, highlighting the need for early preventive measures and screening for organ damage. In contrast to the nature of disease progression, the documented number of complications was lower in adolescents (aged 15–18) compared to younger children (aged 2–14), underscoring the need for improved healthcare access among this age group to ensure continuity of care as well as a better transition to adult care. What is the implication of the main finding? The above findings demonstrate the need for improvement in the utilization of preventive therapy in younger children, and for better access to healthcare among adolescents with SCD. The high prevalence of mental health comorbidities (anxiety and/or depression) and their association with experiencing the most salient SCD complications requires attention to early monitoring and intervention for mental health comorbidities in this population. Hydroxyurea was underutilized among children and adolescents with SCD, indicating a critical gap in treatment that warrants targeted interventions. Background: Patients with sickle cell disease (SCD) experience severe and life-threatening complications over their lifespans. However, research on SCD age-related complications is limited. Objective: This study examined differences in the number and type of SCD-related complications by age group among Texas Medicaid pediatric patients, and the factors associated with salient complications. Methods: This retrospective study used Texas Medicaid prescription and medical claims (2012–2021). Subjects aged 2 to 18 years, with ≥3 SCD hospitalizations or outpatient visits, and continuously enrolled for ≥12 months after the first SCD diagnosis claim were included. Complications were characterized by number and type of organ systems affected. Sociodemographic and clinical factors were used as potential factors associated with the most salient complications. Descriptive and inferential (ANOVA, Chi-square, and multivariable logistic regression) analyses were employed. Results: The included 1555 patients (mean age = 9.5 ± 5.1) were categorized into four age groups: 2–4 (23.4%), 5–9 (26.9%), 10–14 (27.4%), and 15–18 (22.3%) years. Documented number and type of complications differed significantly (all p < 0.0001) by age group, with the 2–14 years group having more documented complications compared to the 15–18 years group. Neurological complications were most common (~65%), followed by infections (~42%), and cardio-pulmonary complications (~30%). Young age group, hydroxyurea use, and having mental health comorbidities were associated with greater likelihood of experiencing vaso-occlusive crises, respiratory infections, and acute chest syndrome. Conclusions: Patterns of SCD-related complications (e.g., VOCs, respiratory infections, and acute chest syndrome) differ significantly by age group, leading to increased morbidity and acute care utilization. Despite its reported association with better outcomes, hydroxyurea utilization was found to be poor, with only 16% of patients receiving it for at least 180 days annually. Access to appropriate healthcare and improved utilization of hydroxyurea are needed to improve health outcomes of this population over their lifespan.