Improving Care for Sickle Cell Disease – Every Patient Counts
LydiaFurman, MD, Associate Editor, Pediatrics
In a recently released article in Pediatrics(10.1542/peds.2018-2218), Dr. Lyn Balsamo and a team of colleagues share an inspiring 5 year-long multi-disciplinary
quality improvement (QI) project whose aim was to decrease total hospital days for
sickle cell vaso-occlusive crises (VOC) by 40%. This ambitious and ground-breaking
initiative was highly successful, but only so, I believe, because the authors were
dedicated, smart and persistent. Their responses to the adversities encountered over
the course of the project are instructive and helpful, and the final program appears
to be reproducible, sustainable and suitable for adoption by other academic centers
that care for individuals with sickle cell disease.
Their multidisciplinary QI project team did everything “right” with the launch of
the initiative. They formed a working group, reviewed literature for best practices,
identified key drivers for their outcome of choice (hospital days), and engaged stakeholders
including providers and families to ensure commitment. Specific interventions included
both familiar and innovative approaches, from new order sets in the electronic health
record, to a daily inpatient activity schedule for patients, twice weekly psychoeducational
programs for inpatients, and a home action plan with green, yellow and red zones akin
to the Asthma Action Plan familiar to many. After 15 months of hard work and implementation,
the team found no improvement at all in their outcome measures.
This is where the project gets interesting. Instead of doing more of the same, i.e.
working harder but not smarter, the QI team did an interim analysis to identify factors
that might have been missed. They found that a relatively small sub-group of patients
who had >4 admissions per year (termed “high utilizers”) accounted for about 60% of all hospital
days, and that mental health resources appeared to be another key driver of their
chosen outcome. The QI team added three very specific interventions to address these
needs, including individualized patient plans. In the third year of the project, the
QI team identified yet another key driver, pain management in the Emergency Room,
and also recognized that the “high utilizer” group changed over time and that patients
with 3 admissions per year were also at high risk. This led to further changes in
the intervention. Finally at the end of the 5 year project period, the QI team was
able to study their data and outcomes as a whole, and all are clearly reported in
The care of persons with sickle cell disease challenges us all at the core: it’s a
genetic disease that causes physical pain and can shorten life span; it tears up families
for whom resources may be scarce already; and no true cure has yet been identified.
This QI project demonstrates how a dedicated team can tackle a clinical problem, like
sickle cell VOC admission days, that may at first appear “too big” to address. By
thoughtfully analyzing and revising throughout using a “Plan-Do-Study-Act” approach,
the QI author team led by Dr. Balsamo have clearly advanced the care of this vulnerable
population. I have purposefully left out many details, since I hope you will take
the time to read this article for both process and content!