Vaso-occlusive crises in patients with sickle cell disease: Parents' perspectives and association with disease outcomes

OBJECTIVES: KSA has been reported to have a high prevalence of sickle cell disease (SCD). The most common complication of SCD in children is pain due to vaso-occlusion crises (VOCs) that ensue when sickle-shaped red blood cells are entrapped in small vessels, leading to infarcts. This study aimed to determine the level of awareness about VOCs among parents of patients with SCD and its correlation with the disease outcomes. METHODS: A cross-sectional study was conducted including 123 parents of children with SCD, aged 2–18 years old. All recruited participants were residents of Almadinah Almunawwarah. A structured and validated questionnaire was used for data collection. RESULTS: The mean total knowledge score was 30 ± 4. The majority of parents (74%) had a good level of knowledge about SCD. There was a significant association between the total knowledge score and the outcome of VOCs during the year prior (p < 0.05). There was no association between the total knowledge score and the parents' education and family income. Regarding methods of increasing awareness of VOCs, 60.97% of parents thought that the best method was by direct meetings about health education, while 30.89% preferred to have written information about the disease. Only 21.13% argued that the internet was a better choice for raising awareness. CONCLUSION: In this study, the parents of SCD patients had a good level of knowledge about VOCs. There was a significant association between the parents' awareness of VOCs and a better disease outcome in their children, as they had fewer attacks and hospital admissions.