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Many of the worst complications of sickle cell disease – organ and bone damage, neurocognitive deficits, pulmonary problems and more – tend to strike during young adulthood.
“This is a time of life when young adults are going through college, getting that first job, getting started with life. To then think about changing doctors is often too much,” says Lori Crosby, PsyD, a clinician and researcher in the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s.
It’s also a time when ignoring their illness can have dire consequences. Deaths and complications from sickle cell disease have long been known to rise as patients move through their 20s.
Crosby is using a four-year, $1.7 million grant from the National Heart, Lung and Blood Institute (NHLBI) to try to change this. She believes some of these negative outcomes can be avoided through better communication with patients and more effective transitions between pediatric and adult-care providers.
“This is also a time when young people may not be employed at all, or may be working without health benefits. Yet because of their age they can no longer receive treatment here, where they’ve been followed for their entire lives,” she says.
For patients nearing adulthood, the program involves new self-management classes and training on how to talk to doctors (a task often handled by parents). The project also will create a patients-only “portal” to access information through MyChart, a feature built into Cincinnati Children’s electronic patient records system.
For providers, the project involves helping doctors not affiliated with Cincinnati Children’s tap into the vast amount of expertise and data the medical center has regarding sickle cell patients.
“Here, we have a team of specialists who work with hundreds of sickle cell patients. In the adult world, a hematologist might have two or three sickle cell patients in their entire practice,” Crosby says. “We want to remove the barriers that may prevent those physicians from coordinating care with us.”
Lori Crosby, PsyD, leads a project to smooth the transition from pediatric to adult care.
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