People with sickle cell disease who were experiencing acute pain crises received far better care at specialized infusion centers than emergency departments, with faster access to pain medication and lower rates of hospital admissions, researchers reported Monday.
Their new study, published in the journal Annals of Internal Medicine, highlights how the barriers to quality treatment in emergency rooms can lead to worse outcomes for patients with sickle cell disease.
“Getting care in the right place at the right time, it makes life better for the patients — and better for the providers and better for the payers,” said Sophie Lanzkron, a hematologist and the director of the Sickle Cell Center for Adults at Johns Hopkins, who led the study.
People with sickle cell disease, most of whom in the United States are Black, have a mutation that causes their red blood cells, which ferry oxygen throughout the body, to take on a sickle shape. During acute episodes, also called vaso-occlusive crises, those cells get jammed up in blood vessels, acting almost like little dams that prevent blood from flowing. The result is excruciating pain (as well as damage to organs) that often sends people to emergency rooms in search of help.
Guidelines from the National Institutes of Health call for rapid — and if necessary, repeated — pain treatment. Prompt alleviation of patients’ pain can help them move and breathe, improving blood flow and getting oxygen throughout the body to end the crisis.
But patients have long complained about poor treatment in emergency departments, whether because of false and racist sentiments like Black people having higher pain tolerance, or because doctors and nurses are dealing with crushes of other patients from car crashes or heart attacks and aren’t well-trained to handle the acute pain episodes. With the backdrop of the addiction crisis, sometimes clinicians suspect patients having crises are lying about their pain in order to get opioids and won’t give them the medication or the high doses they need.
The result: some four in five patients have reported that they’ve suffered through pain at home rather than going to emergency departments. The poor treatment in emergency settings is one example of how the U.S. health system often fails patients with sickle cell disease.
To improve care, some medical centers and community hospitals have set up infusion centers (also called day hospitals) with beds and staff trained to help patients going through sickle cell crises. Sometimes they’re separate facilities, while sometimes they include a few beds at a bigger center — a site where patients receive infused cancer drugs, for example — but with dedicated clinicians.
Research that has examined outcomes from single infusion centers has indicated they can lead to better outcomes, but the conclusions that can be drawn from such studies are limited. What if, for example, people who sought care at that infusion center were generally not as sick as those who went to the emergency department?
For the new study, the researchers sought to gather more robust data that could demonstrate whether the outcomes differences were tied to the setting, and weren’t just about patient characteristics. To do so, they followed for 18 months hundreds of patients with sickle cell who lived within 60 miles of an infusion center in four areas: Baltimore, Milwaukee, Cleveland, and Baton Rouge, La.. They tracked the patients’ visits to infusion centers or emergency rooms for crises that needed to be treated with either infused or injected pain medication, tracking measures like time to first treatment and hospitalization rates.
Overall, they found, infusion centers provided care that more closely adhered to treatment guidelines than emergency departments did. It took patients at infusion centers an average of 62 minutes to get their first dose of pain medication versus 132 minutes at emergency departments. Clinicians were 3.8 times as likely to reassess patients’ pain within 30 minutes — another recommendation included in the treatment guidelines — at the centers compared to emergency rooms. And patients in infusion centers were four times as likely to be discharged home, perhaps because the rapid, more aggressive pain treatment they received precluded the need for hospitalizations.
The infusion center “model offers a better way to manage this horrific disease,” Julie Kanter, a hematologist and the director of the University of Alabama at Birmingham’s adult sickle cell clinic, wrote in an editorial also published Monday. Hospitals should recognize the value of the infusion center model, Kanter wrote, and “as a requirement to do what is right for those living with SCD.”
The problem with the infusion centers, the researchers acknowledged, is that they are limited. They’re typically only open during business hours on weekdays, and only select hospitals have established them. People in any location can have a sickle cell crisis, at any time of the day or day of the week.
“It is not a lot, and it is not nearly enough,” Lanzkron said when asked how many infusion centers existed.
One question is how many patients with sickle cell disease an area needs to justify an infusion center. In the Fresno, Calif., area, where there is no infusion center, Mohammed Sani Bukari, the director of UCSF Fresno’s sickle cell program, is trying to get a few dedicated beds for sickle cell crises at a bigger clinic.
“Most places do not have the capacity or patient volume to have independent infusion centers for sickle cell,” said Bukari, who was not involved in the new study. “So if you don’t have the volumes and the capacity — including the manpower and resources — then probably an embedded infusion center is the way to go.”
But to properly care for all people with sickle cell, the answer can’t only be establishing more infusion centers, said Paula Tanabe, an emergency nurse and vice dean for research at Duke University’s nursing school, who was not involved in the new research. She is working on a number of projects to get emergency departments to better follow the recommended treatment guidelines.
“Even though infusion centers are great, we still have to fix the ER,” Tanabe said.
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