Background <p>Sickle cell disease (SCD) is a lifespan condition associated with substantial morbidity, premature mortality, and high healthcare utilization, particularly due to acute pain crises and other severe complications. Evidence-based guidelines emphasize the importance of comprehensive, multidisciplinary care for optimal outcomes; however, implementation of such models for adults with SCD remains inconsistent, contributing to fragmented care and reliance on emergency services. The primary aim of the study is to evaluate the implementation and impact of a National Alliance of Sickle Cell Centers (NASCC) aligned comprehensive adult SCD center on outpatient engagement, infusion therapy utilization, and acute care use.</p> Methods <p>The University of Alabama at Birmingham implemented a multidisciplinary adult SCD center beginning in 2019. We conducted a retrospective, population-based evaluation comparing care engagement and utilization before (January 2017–December 2018) and after (January 2022–December 2024) center implementation, excluding the COVID-19 period. Electronic medical record data were used to identify adults with SCD and capture outpatient clinic visits, infusion therapy unit use, emergency department (ED) visits, and hospitalizations. Nonparametric statistical tests were used to compare outcomes across periods.</p> Results <p>The adult SCD clinic population increased more than three-fold, reaching 810 patients by 2024, alongside substantial expansion of clinical space, staffing, and infusion capacity. By 2024, nearly 90% of patients with SCD were seen annually in the outpatient clinic. Infusion therapy visits increased fifteen-fold, providing an alternative to ED-based pain management. Mean acute care visits per person per year decreased significantly from 2.11 to 1.26, while mean routine outpatient visits per person per year increased from 2.65 to 5.32 (<i>p</i> &lt; 0.001). Reductions in ED visits and hospitalizations were observed despite a marked increase in the total population served.</p> Conclusions <p>Implementation of a NASCC-aligned comprehensive adult SCD center was associated with improved outpatient engagement, expanded access to preventive and infusion-based care, and significant reductions in acute care utilization. These findings provide real-world evidence that comprehensive, multidisciplinary SCD centers are an effective structural strategy to improve care delivery and outcomes for adults living with SCD and support broader adoption of this model to advance equity and value-based care.</p> Clinical trial number <p>Not applicable.</p>

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Implementation of a comprehensive sickle cell center leads to improved access to care and decreased acute care use

  • Julie Kanter,
  • Allison Plaxco,
  • Najibah Galadanci,
  • Gerhard Helleman,
  • Rachel Klein,
  • Jeffrey Lebensburger

摘要

Background

Sickle cell disease (SCD) is a lifespan condition associated with substantial morbidity, premature mortality, and high healthcare utilization, particularly due to acute pain crises and other severe complications. Evidence-based guidelines emphasize the importance of comprehensive, multidisciplinary care for optimal outcomes; however, implementation of such models for adults with SCD remains inconsistent, contributing to fragmented care and reliance on emergency services. The primary aim of the study is to evaluate the implementation and impact of a National Alliance of Sickle Cell Centers (NASCC) aligned comprehensive adult SCD center on outpatient engagement, infusion therapy utilization, and acute care use.

Methods

The University of Alabama at Birmingham implemented a multidisciplinary adult SCD center beginning in 2019. We conducted a retrospective, population-based evaluation comparing care engagement and utilization before (January 2017–December 2018) and after (January 2022–December 2024) center implementation, excluding the COVID-19 period. Electronic medical record data were used to identify adults with SCD and capture outpatient clinic visits, infusion therapy unit use, emergency department (ED) visits, and hospitalizations. Nonparametric statistical tests were used to compare outcomes across periods.

Results

The adult SCD clinic population increased more than three-fold, reaching 810 patients by 2024, alongside substantial expansion of clinical space, staffing, and infusion capacity. By 2024, nearly 90% of patients with SCD were seen annually in the outpatient clinic. Infusion therapy visits increased fifteen-fold, providing an alternative to ED-based pain management. Mean acute care visits per person per year decreased significantly from 2.11 to 1.26, while mean routine outpatient visits per person per year increased from 2.65 to 5.32 (p < 0.001). Reductions in ED visits and hospitalizations were observed despite a marked increase in the total population served.

Conclusions

Implementation of a NASCC-aligned comprehensive adult SCD center was associated with improved outpatient engagement, expanded access to preventive and infusion-based care, and significant reductions in acute care utilization. These findings provide real-world evidence that comprehensive, multidisciplinary SCD centers are an effective structural strategy to improve care delivery and outcomes for adults living with SCD and support broader adoption of this model to advance equity and value-based care.

Clinical trial number

Not applicable.