Study finds lower treatment use among SCD patients in sub-Saharan Africa
Global survey highlights differences in access, awareness, and care
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People with sickle cell disease (SCD) who live in sub-Saharan Africa are less likely than those in other countries to use common medications to manage the condition, including over-the-counter pain-relieving medicines, a study found.
These patients also tended to report a lower perceived disease burden than those in high-income countries (HICs), the data showed.
“This is the first study to compare the experiences of individuals living in sub-Saharan Africa, where the burden of sickle cell disease is greatest, with the experiences of those living in other LMICs [low- and middle-income countries] and in HICs,” Baba Inusa, the study’s first author at King’s College London’s Faculty of Life Sciences and Medicine, said in a press release from the American Society of Hematology (ASH). “We found that, despite having the same disease, regional and cultural differences substantially influence how they manage their condition.”
Global survey examines SCD experiences across regions
The study, “Sickle Cell Disease Burden in Sub-Saharan Africa Compared to Other Regions: Results from the SWAY Survey,” was published in Blood Global Hematology, a journal published by ASH. The work was funded by Novartis, which has been involved in developing SCD therapies.
SCD is a genetic disorder marked by abnormally shaped red blood cells, which can get stuck in blood vessels and trigger painful episodes known as vaso-occlusive crises (VOCs). The condition primarily affects Black people; roughly two-thirds of people with the disease live in sub-Saharan Africa (SSA).
Despite the heavy burden of SCD in SSA, how patient experiences differ from those in other LMICs and HICs remains poorly understood. To address this, researchers analyzed data from the Sickle Cell World Assessment Survey (SWAY), a project that collected patient-reported information from people living with SCD worldwide. SWAY was run by Novartis in partnership with SCD experts and patient advocacy groups.
The researchers analyzed survey results from more than 2,000 people ages 6 and older. Data from 519 patients in sub-Saharan Africa were compared with those from 422 patients in other LMICs, such as Brazil, India, and Lebanon, and 1,204 patients in HICs, including the U.S., France, and Saudi Arabia.
Common symptoms reported across regions
Results suggested that the physical manifestations of SCD are generally similar across regions, with many of the same symptoms and comparable rates of VOCs reported by patients in sub-Saharan Africa, other LMICs, or HICs.
“The most frequently reported symptoms were similar across regions, with fatigue, headache, and bone aches consistently ranking among the top three,” the researchers wrote. “Common complications such as fever and infections were widely reported across all regions, further illustrating the shared challenges faced by SCD patients globally.”
But despite these similarities, attitudes toward SCD and access to treatment showed marked variations. Patients in SSA were more likely to lack information about their SCD-causing mutation than those in other LMICs and in HICs (35% vs. 24% and 19%, respectively), and were also less likely to use common medications to manage SCD.
These included over-the-counter pain medications, which were taken by 30% of patients in SSA and about two-thirds of those in other LMICs or HICs. Rates of opioid use in sub-Saharan Africa were similar to those in other LMICs (26% and 28%, respectively), but markedly lower than in HICs (73%).
While the majority of patients in other LMICs and HICs reported taking antibiotics and/or folic acid (which helps support red blood cell production), only about half of those in SSA reported such use. Along with reduced use of evidence-backed medications, patients in sub-Saharan Africa were more likely to report using nutritional supplements or homeopathic remedies, which are forms of alternative medicine.
“Overall, more patients in sub-Saharan Africa manage their pain crises at home and delay going to the hospital. These practices can contribute to higher mortality,” Inusa said. “To increase survival in this region, it’s critical that we improve diagnosis and access to treatments like penicillin [an antibiotic] and hydroxyurea,” the primary disease-modifying treatment for SCD in sub-Saharan Africa.
Perceived disease burden differs by region
About one-third of patients in SSA reported a high disease impact on day-to-day activities, and roughly half said SCD caused a substantial emotional burden. These rates were similar in other LMICs and markedly higher in HICs, where nearly half of patients reported substantial day-to-day impact and almost two-thirds reported substantial emotional burden.
The researchers noted that demographics might be driving these differences. Specifically, patients in SSA were generally younger than those in other regions, and the researchers speculated that they “may … have a better-lived experience, as a result of not yet facing the cumulative effects of SCD on employment and education.”
Other factors like differing cultural norms also may play a role, the researchers noted, emphasizing the importance of considering these factors when designing healthcare programs for people with SCD in different parts of the world.
“The seemingly paradoxical finding of lower perceived disease burden in SSA emphasizes the complexity of factors influencing the SCD experience and calls for more nuanced, culturally sensitive approaches to assessing and addressing disease impact,” the scientists concluded.
