IU Health West works to expand care and break sickle cell stigma

Within the last five years, the IU Health West Emergency department has seen double the amount of patient visits for sickle cell disease. Now, the hospital continues to expand care offerings for these patients.

By Charlotte Stefanski, cstefanski@iuhealth.org, writer for IU Health's Indianapolis Suburban Region

Sickle cell disease is a blood disorder that impacts about 100,000 Americans, including many who live in the Indianapolis area.

Within the last five years, the IU Health West Emergency department (ED) has seen double the amount of patient visits for sickle cell disease.

While sickle cell impacts so many, there is currently no cure and limited treatment options. However, IU Health West is continuing its mission to expand its care offerings for these patients and working to educate team members.

The impacts of sickle cell disease

Sickle cell affects how red blood cells are shaped as they travel through the blood vessels of the body. This causes complications related to how well the red blood cells can carry oxygen, as well as issues with blood clots, like strokes and pulmonary emboli.

It is genetically passed down and these complications can be experienced at any age.

“The blood cells form this sickle shape that makes it much more likely for them to clump together—that's really where the problem happens,” explains Leslie Gibbs, an emergency medicine nurse practitioner and team lead. “These cells get sticky and create blockages. That can happen throughout the body and just cause devastating effects.”

The most common issue though—and what typically sends patients to the Emergency department—is a vaso-occlusive crisis (VOC). This is when the cells are sickling, causing debilitating pain and blocking off the vascular system.

Gibbs says IU Health West’s ED sees about a patient a day, close to 300 visits per year, who are experiencing this type of episode.

When patients with sickle cell come to the ED, they need fast pain management for the vaso-occlusive crisis. The first thing team members work on is getting their pain under control.

That’s where IU Health West’s six-room observation unit comes in handy. Since it opened five years ago, the unit has served as a comfortable, quiet and short-stay place for those experiencing a vaso-occlusive crisis as team members work on a plan for treatment.

“Our goal with the observation unit has been to be like a medical home for patients during these crises—to bring in resources, to bring in social work and utilize their individualized pain plans that they have created with their hematology team,” Gibbs explains.

Now, the hospital is trialing new ways to deliver care for these patients.

New resources for a vulnerable population

As IU Health West has looked to improve treatment for sickle cell, it has brought in new roles and processes and is continuing to build new programs.

This spring, West Hospital hired IU Health’s first adult sickle cell nurse navigator, Jade Parker-Dinkins, who has sickle cell herself.

Parker-Dinkins works closely with and provides support to every patient that enters the hospital with sickle cell, all while educating team members about the disease. She not only provides clinical resources to patients but works to connect them to community support services.

In April, the team created a new algorithm in the triage process, so when a patient with sickle cell comes into the ED, Parker-Dinkins is alerted immediately. A nurse will then ask the patient how they prefer their first dose of pain control.

“We know that early pain control is crucial to break the cycle and prevent some of the complications that happen in these phase vaso-occlusive crises,” Gibbs says. “Our goal is to get this medication to the patients and start the process much sooner than we did.”

The IU Health West team has also worked together to find solutions for their patients with sickle cell, including holding bi-monthly meetings—both hospital wide and with IU Health’s downtown Hematology and Oncology team.

The meetings are multidisciplinary, with teams from Hematology, the Emergency department, inpatient units, Pharmacy, social workers and more. Their purpose is to share what works.

“The goal of these is to share resources, talk about specific patients and the barriers and roadblocks that are in place, and how we can coordinate from a system, from a whole hospital perspective, to make things better,” Gibbs explains. “It’s been such a great resource to bring all of these stakeholders together and focus on the issues and how we can work together to improve it.”

The IU Health West team has also been working closely with Dr. Andrew O’Brien, MD, who leads the Sickle Cell Center at IU Health, to create a virtual visit option for patients with sickle cell at IU Health West. The team hopes to begin trialing telehealth options soon to help connect patients with even more resources.

Breaking the stigma

Because sickle cell is a chronic disease, the IU Health West Emergency department often cares for their sickle cell patients regularly.

As improvements to care have been made, Gibbs says patients have expressed gratitude for the West team’s fast and efficient approach.

“Overall, so far, it has been positive. Our average hospital length of stay for sickle cell patients has dropped dramatically,” she says.

And now that many of these new programs and roles have been implemented for months or years, Gibbs is working on an evaluation for both patients and team members to gather information on their experiences and to see what has gone well and what can be improved.

Most importantly though, the IU Health West team is still working to educate fellow team members and the community on sickle cell, an illness that holds a lot of stigma.

While anyone can have sickle cell, the disease primarily impacts Black and African American populations. According to the Centers for Disease Control and Prevention (CDC), it occurs in about one in 365 Black or African American births and one in every 16,300 Hispanic American births.

And along with the physical side of sickle cell, there are plenty of psychosocial impacts, including poverty, food insecurity, barriers to healthcare and education, less than ideal housing and more.

Gibbs encourages others to change the way they talk about sickle cell and to acknowledge that it’s a serious, chronic, life-long condition that people are born with.

“This is a population that has understandably lost a lot of trust in the medical system, and it's on us to fix that. We need to continuously follow evidence-based practices, keep up with the latest research and make improvements,” Gibbs says. “It's vital, because this is a population that is going to continue to need medical care. There are some really exciting treatment options that are on the horizon, but it's on us to build that trust back up.”