Living with sickle cell disease in the Arab world: Quality of life beyond clinical severity

Sickle Cell Disease (SCD) poses a significant public health burden in the Arab world. Yet, its impact on Health-Related Quality of Life (HRQoL) remains understudied, particularly across different MENA countries. Most existing research has focused on clinical and pharmacological outcomes, with limited attention to the socioeconomic and adherence-related determinants of patient well-being.

This cross-sectional study was conducted between November 2025 and January 2026. Data were collected using the WHOQOL-BREF, the 5-item Medication Adherence Report Scale (MARS-5), and a researcher-designed demographic and clinical questionnaire. We compared the countries, analyzed relationships using Pearson correlation, and used multiple linear regression models to find out what affects the overall quality.

This study enrolled 443 SCD patients from Saudi Arabia (n = 235) and Egypt (n = 208). Saudi participants reported significantly higher overall QoL and superior scores in psychological and environmental domains, while Egyptian patients demonstrated higher medication adherence. All WHOQOL-BREF domains correlated significantly with MARS total scores, with psychological health showing the strongest association (r = 0.34). The regression model explained 44% of the variance in overall QoL (R² = 0.44). Insurance coverage and medication adherence were the strongest positive predictors, followed by higher income, older age, and university education. Frequent hospitalization and chronic SCD complications were the strongest negative predictors. Despite these associations, medication non-adherence was highly prevalent in both cohorts (Egypt: 63.5%; Saudi Arabia: 59.6%; p = 0.191). A separate regression model identified older age, university education, higher income, insurance coverage, hydroxyurea use, and Saudi nationality as independent predictors of better adherence (R² = 0.26), while frequent hospitalization and chronic complications independently predicted poorer adherence.

Socioeconomic status and healthcare access substantially shape the burden of SCD, which extends beyond clinical severity. Universal insurance coverage, structured adherence support interventions, and addressing broader social determinants of health are essential priorities for improving QoL in SCD patients across the MENA region.