North Carolina patients with sickle cell disease are a small population that experiences repeated and costly ED visits and hospitalizations.

“That’s why we started looking at them to see what we could do to help them,” says Debbie Murray, RN, CPN, CMAC, CHC, manager of telephonic support program at Community Care of North Carolina (CCNC) in Raleigh. Murray authored a poster about the Sickle Cell Disease Initiative and presented it at two case management conferences. She is scheduled to speak about sickle cell disease and care management at additional conferences in the fall of 2017.

CCNC has 600 care managers statewide. They work primarily with Medicaid patients, matching them with 14 networks and care managers across the state.

Sickle cell patients who have commercial insurance or no insurance receive assistance from the North Carolina Sickle Cell program, which collaborates with CCNC, Murray says.

CCNC formed a task force in 2013 to find solutions for the sickle cell population. After reviewing Medicaid data and consulting with providers and the public health sickle cell program, the task force learned that they fail to visit their primary care physicians (PCPs) and hematologists regularly. This was due to lack of insurance, living far from specialty centers, and having limited local resources, according to the report. Plus, EDs had trouble managing pain medication for sickle cell disease patients.1

The Sickle Cell Disease Initiative’s objectives were to enhance co-management between hospitalists, specialists, care management, PCPs, and public health programs and to decrease the fragmentation of care. The program resulted in improved patient engagement.1

Here’s how it worked:

  • CCNC convened a state work group. Working with the North Carolina Emergency Nurses Association and the North Carolina College of Emergency Physicians, CCNC Pediatrics and the state work group developed a Vaso-Occlusive Crisis Management algorithm.1

When sickle cell patients are in pain with their disease flaring up, they need immediate treatment, Murray says.

The algorithm helps identify those crisis moments. It is designed in an oval flowchart with patients heading either to their PCP or the ED. The PCP can refer patients to a hematologist and coordinate care with the sickle cell program educator counselors. The ED can refer patients to the CCNC call center, which also will refer them to the educator counselors. Network care managers can be referred by PCPs, the CCNC call center, and the educator counselor.1

“Part of the algorithm is to make a referral for someone to work with patients to figure out what kind of barriers they’re facing,” Murray says.

  • ED staff use checklist referral form. “We look at the reasons they’re in the emergency department, and what they need,” Murray says.

Sickle cell patients often have financial and emotional needs. “We see a lot of emotional needs, like anxiety and depression,” Murray says. “Some people have difficulty getting their prescriptions.”

Using a checklist referral form, ED staff checks off answers to questions about the patient’s access to transportation, relationship issues, prescriptions, pain, and emotional or mental health needs, Murray says.

This patient information goes to CCNC staff, who make appropriate referrals.

“We work with three of the major hospital systems here, and we’re working to spread it across the state to others, using grants with Duke University,” Murray says. “We’d like for the program to be completely across the state.”

  • Care managers reach out to patients. When patients need an in-person visit, a care manager will visit their homes or meet them at their primary care physician’s office.

“At the first meeting, they work with patients and assess patients’ needs,” Murray says. “They see whether they have a provider and transportation to get there.”

Patients sometimes live in areas without access to hematologists. Or, they might have financial needs that lead to missed medication doses. The care managers can educate patients to watch for signs and triggers of a health crisis, she says.

Care managers also can be patient advocates. They talk with providers about patients’ needs and connect patients with specialists.

“It’s a multidisciplinary plan to work with them,” Murray says. “Care managers, social workers, and health coaches in call centers all can touch base with patients regularly.”

  • Refer to health coaches as needed. Care managers have the option of referring stable patients, who have some health issues, to health coaches, Murray says.

Health coaches can teach patients about stress management, weight management, tobacco cessation, and how to better maintain their sickle cell disease.

“Health coaches can touch base with patients to see if they’re taking their medications and whether they’re experiencing any issues,” Murray says.

Care managers work with patients during acute phases, but can hand them off to health coaches for follow-up and to learn about prevention.

“They can continue to work with patients for a longer period of time,” Murray says. “If the patient gets back into the acute phase, the health coach lets the care manager know. We call the care manager and say, ‘This patient is going through a crisis, can you help him?’ That’s another piece of great collaboration.”

  • Pharmacists also assist care managers. CCNC has community-enhanced pharmacies that provide patients with education, blister pack medications, and medication delivery when needed, Murray says.

“If we thought there was a problem with opioids, we call the pharmacy for help with that,” she says.

Since starting several years ago, the sickle cell program has made more than 800 referrals and sent more than 500 patients to the CCNC networks, Murray says.

“Last year, we had teams from hospitals across the nation that came to find out how we’re doing this,” she says. “Most states don’t have a CCNC or networks that extend across the state, so the key is to figure out how they can replicate it using the resources they have.”


  1. Murray D. Cross-sector system improves continuum of care for sickle cell patients. Poster presented at the Case Management Society of America conference, held June 26-30, 2017, in Austin, TX.