Alliant Quality—the Quality Innovation Network-Quality Improvement Organization (QIN-QIO) for Georgia and North Carolina—is helping hospital emergency department (ED) staff understand the needs of patients with sickle cell disease.
Sickle cell disease (SCD), the most common genetic disease in the United States, mostly affects the African-American population. Patients with SCD have pain due to a vaso-occlusive crisis (VOC).
VOC—which develops from the obstruction of blood vessels by sickled red blood cells—is a common but extremely painful complication of SCD. VOC is the top reason that people with the disorder go to the ED or hospital. While people with SCD are living longer than ever before, their lives have been impacted by the unpredictable, intermittent or constant pain from VOC, which is often poorly managed in EDs.
To address this problem, Alliant Quality lets the patients speak for themselves, giving voice to the more than 100,000 individuals suffering with the disease.
“It was all about storytelling. We used the journey of the story as a resource for emergency departments to understand what patients with SCD go through every day,” said Jacqueline Brown, project lead for Alliant Quality’s Sickle Cell Quality Improvement program.
The QIN-QIO works with partners to recruit hospital EDs that want to improve care for adults with SCD who are experiencing VOC. The participants complete learning sessions, share best practices and barriers on monthly calls, and participate in a quality improvement project of their choice. Each learning session begins with a patient presenting his or her story about a care episode for VOC, and is followed by a discussion of what went well or could be done differently.
"It was all about storytelling. We used the journey of the story as a resource for emergency departments to understand what patients with SCD go through every day."
The virtual learning sessions, supported by national subject matter experts, provide participants with access to resources, such as podcasts, webinars and video casts on important aspects of SCD management.
“Although the sessions were for the benefit of the emergency departments, patients were an integral part and learned a lot as well,” Brown said.
The program has been a success and is on track to produce tangible results for EDs and those suffering from SCD. The sessions have provided resources for emergency departments that will lead to decreased ED return rates and admission rates.