School absenteeism and associated factors among children and adolescents attending Sickle Cell Clinic, Mulago National Referral Hospital, Kampala District.

Abstract

Introduction: In Uganda, over 15,000 babies are born with Sickle Cell Disease (SCD) every year, with 50% surviving to school age. Children and adolescents with SCD frequently experience recurrent complications that impact their quality of life and disrupt daily activities, including school attendance. School absenteeism is a key indicator used by the United Nations Educational, Scientific, and Cultural Organization (UNESCO) to assess the risk of school dropout and identify students in need of special support. Objective: To assess the burden of school absenteeism and factors associated with Chronic absenteeism among children and adolescents with SCD. Methods: A comparative cross-sectional survey was conducted at the Sickle Cell Clinic of Mulago National Referral Hospital between August and November 2024. Participants included: children and adolescents, aged 6-19 years, with SCD, their peers or siblings without SCD, and their parents, guardians, or caretakers. Data was collected on the number of school days missed (primary outcome), socio-demographics, stigma, coping strategies, knowledge about SCD, and medical history. We also abstracted data from the medical records and performed physical and clinical examinations. Chronic school absenteeism was defined as per the United Nations Educational, Scientific, and Cultural Organization (UNESCO) criteria as missing at least 10% of the expected school days in the previous school term. Logistic regression was used to determine factors associated with school absenteeism. A p-value < 0.05 was considered significant. Results: A total of 179 children with SCD (along with their caretakers) and 179 siblings/peers participated. Females among those with SCD versus non-SCD peers were ~50% and 58 %, respectively. The median age (interquartile range [IQR]) of both groups was 11 years (SCD: IQR 9-13; peers: IQR 9-14). Children with SCD had a median number of 1 clinic visit (range 0-5), 0 hospital admissions (range 0-5), 1 pain crisis (range 0-10), and 0 blood transfusions (range 0-5) in the previous term. Those who were admitted had a median hospital stay of 7 days (IQR 3-10). Most children were in primary school (SCD: 74%; siblings/peers: 69%). Class repetition was more common among children with SCD (24%, 42/177) versus their siblings/ peers (14%, 25/179), p=0.018. School absenteeism was significantly higher among children with SCD (88.8%, 159/179) vs (36.9%, 66/179); missed a median of 5 days (IQR 2-10) in the previous term compared to 0 days (IQR 0-3) among their peers (p<0.001). Chronic school absenteeism affected 33% (59/179) of children with SCA versus 6% (11/179) among peers. Children with SCD had 7.3 times higher odds of chronic absenteeism (OR 7.3, 95% CI 3.7-14.4, p<0.001) than their peers. Among children with SCD, those who had ever repeated a class were more likely to be chronically absent (adjusted OR [aOR] 2.5, 95% CI 1.1-5.9, p=0.035). Additionally, each hospital admission increased their likelihood of chronic absenteeism (aOR 3.6, 95% CI 1.9-6.8, p<0.001). Conclusions: Children and adolescents with SCD experienced significantly high rates of school absenteeism compared to their siblings or peers, with one-third chronically absent. Class repetition and frequent hospital admissions were strongly associated with absenteeism, highlighting the educational burden of SCD-related complications. These findings underscore the urgent need for targeted interventions, such as school-based support programs, improved access to healthcare, and strategies to enhance disease management strategies to reduce absenteeism and promote academic success for children with SCD.