High Healthcare Utilization in Adolescents with Sickle Cell Disease Prior to Transition to Adult Care: A Retrospective Study

Abstract

Background: The transition from pediatric to adult care in the US is often difficult for individuals with sickle cell disease (SCD). Young adults (18 to 25 years of age) have higher acute care utilization and an increased risk of poor outcomes. The current study was designed to provide greater insights into patients (16 to 18 years of age) with SCD prior to their transition to adult care. Objectives: To describe current treatment patterns, pain crises prevalence, SCD-related complications, and healthcare resource utilization (HCRU) in 16-to-18-year-old patients with SCD. Methods: From 1/1/2015-6/30/2017 using MarketScan Databases, patients were included if they were 16 to 18 years old at the index date, had ≥1 inpatient or 2 outpatient SCD diagnosis claims during the identification period, and were continuously enrolled in the database for at least one year prior (baseline) and post index date. Outcomes included medications, disease management interventions, Charlson Comorbidity Index (CCI), vaso-occlusive (VOC) crises requiring healthcare visits, HCRU, and SCD complications. Results: 1,186 patients were included; most (64.3%) were female. The mean CCI was 1.3 (SD: 0.7). In the overall cohort, patients experienced an average of 3.9 (SD: 4.2) VOCs and most patients (61.1%, n=725) had chronic complications during the one-year follow-up. Pulmonary disease (31.1%, n=369) was the most frequent complication; blood transfusions (mean: 8.4 [SD:7.0]) and iron-chelating therapies (mean: 8.6 [SD:10]) were the most common interventions and medications, respectively. In the 16 to 18 year old group, patients with SCD had 2.0 (SD = 2.3) hospital admissions, 3.4 (SD = 4.0) ER visits, and 5.0 (SD = 4.2) office visits. Conclusions: Prior to transition to adult care, adolescents with SCD already have significant acute and chronic disease-related complications, possibly contributing to frequent healthcare visits. Increased attention to this age group, including improvements in disease modifying therapy, are needed prior to transition to adult care systems to improve outcomes.

“A child with sickle cell disease can't live with just anyone.” A mixed methods study of socio‐behavioral influences and severity of sickle cell disease in northern Nigeria

“…The rates of childhood hospitalization for VOC (73.1%) was similar to other Nigerian centers (61.5%‐64.8%), 25,26 but higher than others (36%‐53.2%) 27,28 . It was also comparable to figures from Asia (73.84%), but higher than the United States (43%‐69%) 29‐31 . Hospitalization for VOC in the preceding year (41.1%) was also similar to some Nigerian centers, 1,25,26 but lower than others (61.5%‐91.6%) 32,33 .…”

“…27,28 It was also comparable to figures from Asia (73.84%), but higher than the United States (43%-69%). [29][30][31] Hospitalization for VOC in the preceding year (41.1%) was also similar to some Nigerian centers, 1,25,26 but lower than others (61.5%-91.6%). 32,33 Likewise, in the United States, one in five children with SCD had ≥3 VOC in the preceding year, while one in four had <3 episodes.…”

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

“…Pain is considered the "hallmark symptom" of SCD and is also one of the main reasons for hospitalizations 10,30 and decreased HRQOL. 9 However, literature shows that other potential reasons for increased healthcare use include mental health concerns 31,32 and poor medication adherence, 33 which are also opportunities to examine further in future studies.…”

Age‐ and sex‐specific rates of gall bladder disease in children with sickle cell disease

“…Disease severity was characterized as low or high based on the annual number of acute outpatient or emergency room visits, and inpatient hospitalizations for an acute vaso-occlusive complication (VOC; acute chest syndrome, acute pain episode, splenic sequestration, or priapism; Table S3). [35][36][37] When the annual number of VOC visits equaled or exceeded four, disease severity was considered high. We characterized hydroxyurea exposure as an ordinal variable based on the annual number of days of hydroxyurea supplied grouped into 90-day increments, with zero days as the reference category.…”