Sickle Cell Pain: When More Care Isn’t Better Care

A recent study conducted at the Johns Hopkins Sickle Cell Infusion Center highlights the challenges of managing severe pain in some patients with the condition. Researchers found that a subset of patients presenting to the center were more likely to visit the emergency room for crisis pain even when being treated with high doses of opioid medications. The authors state that their findings emphasize the need for better treatment approaches for the 10-20% of patients with sickle cell disease who have the highest levels of pain. C. Patrick Carroll, MD, director of psychiatric services for the Johns Hopkins Sickle Cell Center for Adults commented “Although progress has been made in managing the pain crises of many with sickle cell, there remains a group of sicker patients who seek hospital care with greater than typical frequency and whose pain is not being treated effectively.” The findings were reported in the American Journal of Hematology.

Sickle cell disease is the most common inherited blood disorder on the US, and 1 in 13 African Americans have “sickle cell trait” or one copy of the gene that causes the condition. The resultant crescent-shaped red blood cells can stick in small blood vessels causing severe and crippling pain. Of the 10-20% of patients with more frequent pain episodes, Dr. Carroll noted “The most clinically interesting finding but also the most puzzling was the extent to which higher opioid doses--both at home and during acute visits--were tied to poorer outcomes and more complications. There is the conundrum that despite more aggressive treatment, a subset of people didn’t get as much benefit.” He pointed to factors such as opioid tolerance and disconnection of care between crisis centers and day-to-day patient management. 

Read about the study.

The journal abstract may be read here.