Sickle Cell Disease Impact on Youth Health-Related Quality of Life in Mathare, Nairobi, Kenya

Abstract

Background: Sickle cell disease (SCD) is a chronic inherited hemoglobinopathy associated with recurrent pain, emotional distress, and functional impairment that collectively diminish health-related quality of life (HRQoL). In Kenya, limited evidence exists on HRQoL among youths living with SCD, particularly those residing in informal settlements where socioeconomic challenges may intensify disease burden. Objective: To assess HRQoL among youths living with SCD in Mathare, Nairobi County, and examine its association with selected sociodemographic characteristics. Methodology: A descriptive cross-sectional study was conducted among 116 youths aged 13–24 years receiving care at the German Doctors–Baraka Health Centre in Mathare slums. HRQoL was measured using the WHOQOL-BREF tool. Descriptive statistics summarized participant characteristics and domain scores. Associations between HRQoL and sociodemographic factors (age, gender, education, occupation, and living arrangement) were analyzed using Chi-square tests, one-way ANOVA, and Kruskal–Wallis tests, with statistical significance set at p < 0.05. Results: Participants reported moderate HRQoL across domains. The Social Relationships domain had the highest mean score (61.64), while the Environmental domain was lowest (53.99). Pain interfered with daily activities in 61.2% of participants, and 78.4% experienced frequent negative emotions. Respondents’ sex was the only sociodemographic factor significantly associated with HRQoL (p < 0.05), with females reporting lower physical, psychological, and environmental scores. Age, education level, occupation, and living arrangement showed no significant associations. Recommendations: Gender-responsive psychosocial support, enhanced pain management, strengthened peer-support systems, and interventions aimed at improving environmental conditions are essential to improve HRQoL among youths with SCD living in resource-limited urban settings.