A Look Back at 4 Years of Improving Sickle Cell Disease Care at a Systems Level

Posted June 11, 2015 by NICHQ

Sickle cell disease (SCD) is a chronic condition disproportionately affecting our country’s most vulnerable populations, many of whom experience fragmented, poor quality and often inhumane care1,2. Improving the quality of care and overall health of individuals living with SCD is a critical challenge that requires a multifaceted approach. Multiple stakeholders including patients, family members, primary care providers, specialists, community-based organizations, public health agencies and payers need to work collaboratively to ensure individuals with sickle cell disease have access to a holistic system of care that ultimately leads to optimal health.

From 2011 to 2015, NICHQ served as the National Coordinating and Evaluation Center for the Sickle Cell Disease Newborn Screening Program (SCDNBSP). NICHQ convened grantee teams and collaborated with them to focus on areas of similarity (acute care; care coordination/medical home; screening and follow up; self-management; and transition of care) to achieve breakthrough improvements in care for children and adults with SCD. NICHQ also led the development of a robust measurement strategy and change package to guide improvements in care for this population.

Highlights from the SCDNBSP (which was ran in collaboration with the Sickle Cell Disease Treatment Demonstration Program and was collectively known as the Working to Improve Sickle Cell Healthcare (WISCH) project) include:

  • 69 percent improvement in decreasing the time that patients with SCD must wait to have their pain assessed.
  • 29 percent improvement in decreasing the time between triage and the receipt of first dose of pain medication.
  • 135 percent improvement in the percentage of patients who were evaluated by a hematologist within the past year, and a 170 percent improvement in the percentage of patients whose care plans were reviewed during their visit.
There were many grantee team highlights and successes too, including:
  • New York team: Produced a patient event diary for individuals to track their symptoms and manage disease treatment at home; implemented a transition program based on the Got Transition? Guidelines; created a trait education video to be shared with patients on multiple platforms; and established a community outreach program including routine SCD testing
  • Ohio team: Trained clinicians in the ACCEPT protocol, which uses motivational interviewing to structure conversations about self-management topics; expanded the use of hydroxyurea to patients under five years of age
  • Tennessee team: Decreased emergency department visits and hospital re-admissions within 30 days; established a patient-centered medical home at the federally qualified health center, which increased numbers of patients seen by a primary care provider and improved case management; and established an annual family retreat, which gives families direct access to providers outside of the medical setting. In addition, the clinical team developed a series of checklists to standardize care for a variety of ailments
NICHQ’s development of a set of measures around screening and follow-up, which will be published this fall in a special supplement to the American Journal of Preventive Medicine, has resulted in NICHQ being asked to partner with the Sickle Cell Disease Association of America in the evaluation and shared measurement component of the new round of the SCDNBSP grant, which began June 1, 2015.

“The accomplishments from our work on this project are impressive and serve to inform and improve future care for people living with sickle cell disease,” says Suzette Oyeku MD, MPH, strategic project director for NICHQ’s sickle cell work. “Because of this work, individuals with sickle cell disease are experiencing higher-quality, more coordinated, and more respectful care at sites across the nation.”

1 Todd KH, Green C, Bonham VL, Haywood C, Ivy E. Sickle cell disease related pain: crisis conflict. The Journal of Pain. 2006;7(7),453-458.
2 Steiner CA, Miller JL. Sickle cell disease patients in US hospitals, 2004. HCUP Statistical Brief# 21. Agency for Healthcare Research and Quality. Rockville, MD. December 2006.


Learn more:

In 2014, NICHQ released a Congressional Report with details on improving sickle cell care and outcomes for patients. This included three levels of action: clinical delivery and public health programs, the design or re-design of the federal Sickle Cell Disease Treatment Demonstration Program, and broad health policy. For more information about NICHQ’s ongoing work regarding sickle cell disease, visit http://sicklecell.nichq.org.

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