Treating Pain More Quickly for Children with Sickle Cell Disease at Boston Medical Center

Hospital uses quality improvement techniques to cut the wait to pain medications in half.

September 5, 2012
By Kristina Grifantini

(Click the image above to enlarge) 

Healthcare providers at the Boston Medical Center (BMC) have slashed in half the time it takes to deliver pain medications to sickle cell patients seeking help in the pediatric emergency department (ED), and they did it in just over a year. Now other professionals across the country are looking to them to address this common problem for people living with sickle cell disease.

Individuals with sickle cell disease—a genetic blood disorder that causes tissue death and organ failure—often go to the ED when they experience the bouts of debilitating pain that are typical with this disease. These pain crises can be brought on by something as simple as cold or dehydration and can last for days. When a crisis occurs, blood cells morph from round to sickle-shaped. In this new form, the cells get caught in blood vessels, causing pain, organ dysfunction, stroke, and other symptoms. Treatment for a crisis includes hydration and anti-inflammatory and pain medication. Long waiting times before treatment prolongs patient suffering and can lead to more frequent hospitalizations.

“The best thing we can do for these patients is treat their pain aggressively,” says James Moses, MD, MPH, who is part of the team which began the quality improvement changes at the BMC. “Pain should be considered an emergency and our response as a healthcare system has to treat it as such.”

The BMC partnered with NICHQ’s Working to Improve Sickle Cell Healthcare (WISCH) initiative, a national quality improvement project aimed at improving screening and treatment of the disease. The project, funded through the Health Resources and Services Administration (HRSA), is helping 15 teams across the country improve care for sickle cell patients. Team members include pediatricians, nurses, patients, hematologists, and others. The initiative is helping these teams use quality improvement techniques to improve not only ED wait times, but also the coordination of sickle cell care among professionals, the transition of care from pediatrics to adulthood, screening infants and parents who may be carrying sickle cell trait, and other efforts.

“WISCH gave us the resources and network to improve the work that we're doing,” says Barry Zuckerman, MD, chairman of the department of pediatrics at BMC and principal investigator.

BMC, which sees around 200 children with sickle cell disease (a crisis can occur even before a child is one year old), regularly recorded a 50-60 minute wait until patients received their first pain treatment. That was before the quality improvement steps began. Now, after standardizing the process, testing different methods of delivery and implementing other innovations, the average wait until pain medication for sickle cell patients in the pediatric ED is 20-25 minutes. To achieve that reduction, the team addressed inconsistencies in response times and confusion about the disease. (See the chart at top.

"When a child comes in with asthma everyone knows what to do and often the treatment has already started even before I get there,” adds Patricia Kavanagh, MD, assistant professor of pediatrics at BMC. “We wanted that kind of approach where everyone knows what the doses are and the procedure is standardized.”

To determine these steps, the team used quality improvement techniques to test and measure the efficiency of changes to the system. The group first experimented with different pain medication treatments. The typical treatment, an IV, leads to delays and discomfort because patients’ veins tend to harden after repeated IV punctures. The team tried under-the-skin pain medication, but patients reported dissatisfaction. Then the team decided to try intranasal fentanyl, a medication sprayed into the nose, typically used for pain from long bone fractures or abscesses. With a rapid absorption rate, proven efficiency and safety, and ease of use, patients gave glowing feedback. 

After deciding intranasal fentanyl was effective at providing early pain relief, the team then established a standard protocol of administering two intranasal treatments following two IV treatments within an hour. This one-two punch of pain relief is important because “once you start having pain you start having stress, which causes more sickling,” says Kavanagh. “It’s a tough cycle that we’re trying to break with pain relief and hydration.”

The team also developed a pain delivery calculator, which lets ED nurses input a patient’s age and weight to quickly receive calculations of pain doses. “After we did that, we’re seeing marked improvement,” says Kavanagh. “The ED is now really a better-oiled machine for these patients.” Not only have they seen a reduction in time to initial pain medication, but they’ve also seen improvement in pain scores reported by patients. Next, the team hopes to implement similar changes in the adult ED.

The team has shared their results with other teams in the WISCH program who have expressed interest. “As far as we know, we’re the first ED to assimilate intranasal fentanyl,” says Moses. “It’s a huge thing for this population that we cut their time to initial pain mediation in half.”

Aside from streamlining pain treatment procedures, the BMC and other WISCH teams focus on educating providers as a way to improve care in the ED. “Pain is invisible and it's very hard to measure,” says Kavanagh. “These kids can have pain several times a year so they know that getting upset makes it worse. They'll use distraction techniques and come into the ER looking pretty calm, so people don’t believe them when they say they are in the worst possible pain. Through this project we’ve been doing a lot of education to counter that.”