Health related quality of life among adolescents with sickle cell disease in Saudi Arabia

Abstract

Introduction: Increased life expectancy due to recent medical advances has increased the need to understand more fully the quality of life (QoL) in patients with sickle cell disease (SCD) and factors predicting disease adaptation .The objectives of this study were to assess the impairment of health related quality of life (HRQoL) domains in a sample of Saudi Arabian adolescents with SCD. Methods: A non-probability sample composed of Saudi adolescents with SCD (n=180) aged 14-18 years and comparable age and gender matched healthy controls (n=202). Socio-demographics and disease related data were obtained through personal interview with parents/legal guardians and reviewing patients' medical records. Selfadministered 'Short Form-36' questionnaire was used to assess HRQoL of the included groups. Results: HRQoL showed significant deterioration in adolescents with SCD especially in role physical, general health, and bodily pain domains irrespective of the gender, while female adolescents with SCD demonstrated significant deterioration in emotional wellbeing. Those with SCD-complications showed worse scores along the physical, general health, and emotional wellbeing domains. HRQol scores were negatively associated with increasing age, female gender, rural residence, low family income, presence of disease-related complications and frequent hospital admissions as revealed by multivariate regression analysis. Conclusion: Saudi adolescents with SCD experience deterioration along all domains of HRQoL especially the physical. Disease related complications and sociodemographic correlates are significant determinants to worse HRQoL among the included adolescents with SCD.

Key words: Sickle cell disease, adolescents, HRQoL, auality of life, disease complications, socio-demographics