Highlighting Healthcare Disparities in Sickle Cell Disease Management in Resource-Constrained Settings: A...

Sickle cell disease (SCD) is a genetic disorder characterized by crescent-shaped red blood cells, which can result in a number of complications. SCD prevalence is higher in countries with limited resources and, in certain regions such as Lebanon, may be compounded by high consanguinity rates, posing significant challenges for both healthcare systems and patients. This study aimed to assess patient needs and the organization of SCD management centers, to identify service gaps, and enhance care.

SCD patients, caregivers, or legal representatives completed questionnaires about their experiences from diagnosis to present. Data were safely preserved for analysis. Additionally, electronic surveys regarding services, equipment, and staffing were filled out by reference staff from healthcare facilities in Lebanon, a low-resource country with a large refugee population. Qualitative thematic analysis and SPSS were used to analyze data.

Among 124 participants, those living in rural areas reported significantly greater obstacles to quality care compared to urban residents (p < 0.001). Facilities unequipped for SCD care reported significantly fewer trained staff (p = 0.001), fewer beds dedicated to SCD (p = 0.003), and reduced use of infection screening tools (p = 0.033) compared to equipped centers. Patients at unequipped centers also reported lower satisfaction with communication, pain control, and psychological support (all p < 0.001), and showed less awareness of genetic counseling and SCD inheritance (p < 0.001).

This study reveals substantial deficiencies in SCD management in the surveyed setting. Addressing gaps in staffing, training, and resource availability is urgently required. Collaborative efforts to strengthen healthcare systems could greatly improve outcomes and ensure people with SCD obtain suitable, high-quality care.