Two nurses and a social worker from the UConn Health Center’s sickle cell disease team are in Maryland this week to present to a national audience.
The Sickle Cell Disease Association of America (SCDAA) has accepted all three of UConn’s abstracts, submitted by nurse practitioner Genice Nelson, nurse Nayre Farrington and social worker Teresa Works, for oral presentation at its annual convention.
“UConn has never had this kind of multidisciplinary presence at this meeting before, and it speaks volumes about how rapidly our program has advanced” says Dr. Biree Andemariam, founding director of the Health Center’s Comprehensive Sickle Cell Clinical and Research Center and lead author of all three abstracts. “It’s important to me that my team, who play important and active roles in all these projects, have the opportunity to be on the national stage. It’s quite remarkable, and I’m really proud of them.”
Works’ study focused on the importance of a social worker being part of a sickle cell disease patient’s care, especially as it relates to emotional symptoms from traumatic experiences that may exacerbate pain from the illness.
“Having a comprehensive clinic is really important because the patients really get all the disciplines to kind of wrap around their needs,” Works says. “They have the physician, they have nursing, they have somebody scheduling their appointments and coordinating their care, and social work that deals with both the concrete services and the behavioral health needs. The patients have gotten to know me. They trust me. They see that I’m a permanent part of their health care team. They feel safe opening up about the difficulties they may have coping with their disease, their pain, their stresses. Not all of our patients have emotional needs, but those who do finally have a way to manage them. Our approach allows mental health services to be embedded in their medical care and this seems to make a lot of sense for them.”
Farrington studied the impact of the first five years of the formal transition program between the pediatric sickle cell disease program at the Connecticut Children’s Medical Center and UConn’s adult program, which is the only comprehensive adult program in central Connecticut.
As part of this unique combined transition program, the entire UConn sickle cell clinical team travels monthly to Connecticut Children’s sickle cell disease clinic. Ideally each child meets with the UConn team at least four times between ages 16 and 21. They learn what it takes to successfully manage their disease as an adult, get to know the adult providers and get comfortable with the idea of one day leaving Connecticut Children’s. Many also make appointments for a guided tour of UConn’s sickle cell clinic and John Dempsey Hospital in advance of their first doctor’s appointment.
“They meet members of our team, which alleviates the anxiety of transitioning, because the pediatric care setting is where they’ve been receiving care since birth,” Farrington says. “Data from the last five years show us that our program is successful in transitioning nearly 70 percent of the time. We have figured out that those who didn’t transition were more likely to live further away from UConn and to have started the transition process at a later age. These are easily modifiable risk factors. We’ve already made changes to fix this and are now seeing more than 90 percent success.”
Neither Works nor Farrington has presented to a national convention before.
“I’m proud to represent this team of women,” Farrington says. “We do fantastic work here. It’s a pleasure to be able to represent UConn, our team, and our dedication to patients with this horrible disease.”
It’s not the first time at the convention for Nelson, who also serves as SCDAA’s secretary, but it is the first time she’s seen three people from the same team chosen to give separate oral presentations, which she calls “a tremendous compliment to our program.”
Nelson analyzed how the UConn Health Center Emergency Department sickle cell pain management fast-track pathway, implemented three years ago, has impacted quality measures. It empowers nurses to evaluate the patient’s eligibility for this protocol based on simple clinical assessments, and if certain criteria are met, the patient can get his or her first dose of pain medication from a nurse rather than wait for a physician.
“It was in place before I joined UConn last year, and our colleagues in the ED deserve a lot of credit for making this protocol work,” Nelson says. “What we’ve found is that because our patients can come in and are typically being treated within a 30-minute window with that first dose of medicine, significantly fewer of them are being admitted. And for those who are admitted, they’re not in for as long. We’ve also been able to cut down their length of stay by an average of at least three days. Plus, each of our sickle cell patients has a specific treatment protocol, what that first dose of pain medicine should be. This is great for the hospital, but even better for the patients. They are getting their pain under good control quickly and are able to go home and live their lives. That’s all they really want to do.”
Andemariam, who was elected vice chief medical officer of SCDAA and is also chief medical officer-elect, is one of the panel moderators for this year’s convention. She joined the UConn Health Center in 2007 as the first physician-scientist recruited following a pledge from the Hartford nonprofit Lea’s Foundation for Leukemia Research. Andemariam started the UConn Health Center’s adult sickle cell disease program, which is part of the Lea’s Foundation Center for Hematologic Disorders.
“Each year it becomes more formal, more organized and more comprehensive,” Andemariam says. “Not only are we providing clinical care, but we are also advancing our mission to develop new and better ways to treat all aspects of sickle cell disease: everything that someone who lives with sickle cell disease deals with, whether it’s physical health and pain, whether it’s access to care, or whether it’s dealing with emotional pain that may exacerbate physical pain. We are also improving the region’s ability to continue quality care in our young. Now these children have a place to go when they outgrow pediatric care. Not only are we providing this care, but we are using evidence to show measurable impact. That’s what differentiates us even more.”
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