Quality of life and its associated factors among children with spina bifida in Ethiopia:a cross-sectional study to inform policy and practice

Background: Congenital myelomeningocele, or spina bifida (SB), is the predominant congenital anomaly of the central nervous system. Beyond its implications on neonatal mortality, SB impacts the long-term quality of life in affected children. This study sought to investigate the health-related quality of life (HRQoL) among children with SB treated at Ethiopia's leading pediatric neurosurgical facility. Methods: Set at Zewditu Memorial Hospital in Addis Ababa, Ethiopia, this hospital-based cross-sectional study spanned from June 30 to September 30, 2022. It incorporated 232 children, using data gathered through interviewer-led questionnaires. The HRQoL was measured using the PedsQL 4.0, a 23-item generic scale. Results: The study's participants had a median age of 5 years (interquartile range = 3 to 6 years). The aggregate mean scores on the PedsQL 4.0 tallied at 68.59 ± 18.01. The lowest scores emerged from queries on school participation, whereas physical and emotional functioning registered the highest scores. Through multiple regression analyses, variables such as family income, monthly household income, number of children, and the presence of a neurogenic bladder showed strong association with HRQoL. Conclusions: This study fills a gap in the literature providing information on the HRQoL and its associated factors for children with SB in low-resourced settings. We champion the proactive integration of quality-of-life metrics into neurosurgical care policy and practice. Given the enduring consequences of SB, interventions honing the HRQoL can steer children toward realizing their intrinsic and enhance societal participation and contribution.