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An international assessment shows many patients are wary of emergency rooms, and clinicians want more diverse therapies.
A global, cross-sectional survey of patients with sickle cell disease and their clinicians showed the most common symptoms and complications associated with the blood disorder are consistent across regions of the world.
Findings from the International Sickle Cell World Assessment Survey (SWAY), presented at the American Society of Hematology (ASH) 2021 Meeting in Atlanta this weekend, showed health care providers in nearly every assessed region of the world expressed dissatisfaction with current sickle cell disease therapies due to the limitation of options—as well as a uniform call for improving the quality of life among patients.
Key differences among regions included clinician experience in exactly how sickle cell disease impacts the daily lives of their patients, including sexual activity and day-to-day tasks. Investigators also observed a contrast between hydroxyurea prescribing in most regions of the world and in Africa, where clinicians may not have as much confidence nor access to the common sickle cell drug.
In an interview with HCPLive during ASH 2021, SWAY investigator Ify Osunkwo, MD, MPH, of the Sickle Cell Disease Enterprise at Levine Cancer Institute, Wake Forest School of Medicine, discussed how the cross-sectional survey helped interpret “any dichotomy in what the providers thought and the patients thought.”
“It’s a pretty wide-spanning survey and it gave us a lot of insight into the differences between countries, between age groups, and across cost-of-living differences between countries,” Osunkwo said. “We got a lot of data about the variability and similarities, and how much burden sickle cell poses to the people who are affected by it.”
Osunkwo discussed the key similarities observed in patients across the globe.
“One thing we saw overwhelmingly, across the board, whether you’re in America, South America, Africa, India, the Middle East: sickle cell has a big impact on people’s lives,” she said. “They experience a lot of pain, they have a lot of disabilities…and one big thing we found there was a lot of angst about going to the emergency room and receiving care.”
Much of that anxiety over receiving emergency care was informed by prior poor experiences among patients with sickle cell, Osunkwo said—an issue that needs to be addressed universally.
“We know that sickle cell patients can die at home, and if you’re avoiding the ER because of the social context, you’re going to suffer under medical context,” she said.
The study, "Experiences of Sickle Cell Disease (SCD) Reported By Healthcare Professionals (HCPs) across Different Regions: International Sickle Cell World Assessment Survey (SWAY)," was presented at ASH 2021.