Assessing quality of life and hematological parameters in children with sickle cell disease: a cross-sectional study in Bukavu, Democratic Republic of the Congo

Abstract

Abstract Objectives Sickle cell disease (SCD) is a common chronic hematologic disorder in the Democratic Republic of the Congo, affecting the quality of life (QoL) of children and adolescents. This study aimed to assess QoL, hematological parameters, and clinical management among a pediatric cohort in Bukavu. Methods A cross-sectional study was conducted among 103 children and adolescents with SCD (aged 2-18 years). Sociodemographic, clinical, and therapeutic data were collected. Quality of life was assessed using the Pediatric Quality of Life Inventory (PedsQL), and hematological parameters were measured. Multivariate analysis identified factors associated with the total QoL score. Results The mean age was 10.6 ± 5.5 years, with a near-equal sex ratio. Most participants lived with both parents and received folic acid (100%), while only 24% were on hydroxyurea and 28% on Penicillin V. The mean total QoL score was 55.8 ± 17.0 and differed significantly across age groups (P = .017), with lower scores among children aged 8-12 years. Significant age-related differences were also observed in pain impact, pain management, emotional functioning, treatment, and communication domains (P < .05). Hematological parameters showed values typical of SCD, with no significant age-related differences. Only the duration of clinical follow-up was positively associated with QoL (β = .23; P = .027). Conclusion Children with SCD in Bukavu experience a substantially reduced QoL, particularly in physical and psychosocial domains. The positive association between continuity of clinical follow-up and QoL underscores the importance of long-term care. These findings support public health strategies to strengthen follow-up, expand access to SCD care, and integrate psychosocial support in resource-limited settings.