Personalized Sickle Cell Disease Plans | Corewell Health

More than a year ago, Dr. Kathleen Jarrett made a promise to a patient.

That promise. she will investigate ways to improve care for adults with sickle cell disease.

Now, Dr. Jarrett and other medical providers at Corewell Health are serving on the Sickle Cell Action Committee to explore and implement a new practice to do just that.

“I wanted to keep the promise,” said Dr. Jarrett, an internal medicine hospitalist at Corewell Health’s Spectrum Health Medical Group in West Michigan.

Sickle cell disease is an inherited red blood cell disorder that causes healthy, round blood cells that easily carry oxygen throughout the body to become hard and sticky.

When this happens, they look like a crescent moon-shaped farming tool called a sickle.

Sickle cells die early, causing a chronic shortage of red blood cells, resulting in anemia or low hemoglobin. They can also block small blood vessels, causing pain and other serious complications such as infection and stroke.

A national health problem

The Centers for Disease Control and Prevention estimates that sickle cell disease affects about 100,000 Americans and occurs in one out of every 365 black or African-American births.

One of the tools guiding the Action Committee is the report, Addressing Sickle Cell Disease. strategic plan and action plan,” published in 2020 by the National Academies of Sciences, Engineering, and Medicine.

Dr. Jarrett said the management of sickle cell disease has often been neglected at the national level, and in 2018, Congress took steps to help change the Sickle Cell Disease and Other Inherited Blood Disorders Research, Control, Prevention, and Treatment Act.

“We know that as a nation, we’ve been behind the curve in managing these patients, and this act was intended to address that gap,” he said.

The goal, she said, is to meet and exceed the highest standards of care.

While the severity of sickle cell disease varies widely among patients, most have one thing in common: pain, Dr. Jarrett says.

A sickle cell crisis occurs when sickle cells become lodged in a blood vessel and block blood flow to the area, causing pain.

“When things get blocked like that, it hurts because they can’t get enough oxygen,” he said. “This is a chronic problem for them.”

It’s often everyday things that trigger a sickle cell crisis, such as the weather, seasonal changes, stress, alcohol, caffeine, lack of sleep, not drinking enough water, and menstruation.

Individual care plans

Dr. Jarrett said treating patients with sickle cell disease presents challenges because each patient’s case is so unique, and many patients have learned over the years what works for them and what doesn’t.

Having to tell a new doctor every time they’re in the emergency room or hospitalized can be frustrating for patients, he said.

This is where a committee or expert improvement team comes in. Their work also involves the commitment of many people, including quality improvement administrators, pharmacists, physicians, and others, Dr. Jarrett said.

As a result of his work, each patient now has an individualized treatment plan called a sickle cell action plan, Dr. Jarrett said.

The plan is located in the patient’s medical record under the problem list and includes the pharmacy, emergency department, and inpatient management section if the patient is admitted for care.

The programs are new for the past two months, but Dr. Jarrett said eventually more patients will receive them once they are treated or admitted to the hospital.

The committee also hopes to expand options with the plan so that a patient’s primary care physician can also access and contribute to it.

“The plan stays with the patient so the provider knows what to do every time,” he said.

This includes pain relievers, medications, etc.

Better pain management

Included in those efforts, he said, is the use of patient-controlled analgesia (PCA) for patients hospitalized with sickle cell disease. It’s a safe pain management option that allows the patient to decide when to use more pain medication, within controlled limits, Dr. Jarrett said.

It allows patients to break a sickle cell crisis more quickly, then come off the drugs and return to their regular medications as quickly as possible, he said.

Another tool the committee has recommended to help hospitalized sickle cell patients control pain is ketamine infusion therapy, he said.

Ketamine, which is approved by the US Food and Drug Administration for anesthesia, can also treat acute pain in some cases.

“The idea is that sickle cell patients can get used to the drugs, so that increasing doses don’t seem to work,” he said. “The ketamine drip is an opportunity to use the reset button to re-sensitize these patients to the drug.”

The committee also partnered with the hematology department at Helen DeVos Children’s Hospital to help ease the transition of sickle cell patients from pediatrics to the adult world, Dr. Jarrett said.

Dr. Jarrett says establishing such procedures is already making a difference for patients.

“I think we’re off to a great start, but I think there’s room for continued improvement,” he said.

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