ORLANDO — Interim results of an international survey presented at the ASH Annual Meeting and Exposition indicate that complications of sickle cell disease, including vaso-occlusive crisis events as well as poor functioning and quality of life, may be underestimated.
In this video, Ifeyinwa Osunkwo, MD, MPH, director of the Sickle Cell Disease Enterprise at Atrium Health’s Levine Cancer Institute, discusses early data from SWAY, an ongoing study investigating the impact of sickle cell disease on more than 2,100 patients in 19 countries. Osunkwo and colleagues found that 91% of patients surveyed had at least one vaso-occulsive crisis (VOC) within the past 12 months regardless of phenotype, including those associated with more mild disease. The average rate of VOCs across the cohort was 5.1 per year, which is higher than previous estimates, according to Osunkwo. Results also showed that nearly 25% of patients did not seek health care when they were in pain.
“It gives you a better sense as to how profound sickle cell disease impacts people’s lives, but also that a lot of what they suffer is not reflected in their health care utilization, which is where most of our data comes from,” Osunkwo said.
The survey also demonstrated that sickle cell disease has a “profound impact” on quality of life and physical functioning, underscoring the importance of treating more than just physical pain, but also the consequences of physical pain, according to Osunkwo. Future research efforts will assess the burden of sickle cells disease in individual countries.
“With that data, we can help providers and the health care system really fine-tune health care delivery for this population,” Osunkwo said.
James J, et al. Abstract 49. Presented at: ASH Annual Meeting and Exposition; Dec. 7-10, 2019; Orlando.
Disclosure: Osunkwo reports serving on the data safety monitoring board for Micella Biopharma, being a consultant for Pfizer and Novartis, and receiving speaker’s bureau fees from Novartis and Terumo.