Challenges faced by pediatric patients with multiple sclerosis during disease progression and treatment: A multicenter cross-sectional study in Türkiye

Abstract

Background & Objective: Multiple sclerosis is a chronic and progressive disease characterized by inflammation, demyelination and degeneration of the central nervous system. This study aimed to describe the sociodemographic and clinical characteristics of children with multiple sclerosis.

Methods: The cross-sectional study was collected data from 120 children who met the research criteria and were under follow-up at 7 hospitals in Türkiye between August 2021 and February 2022. Ethical approval was obtained from the Medical Research Ethics Committee of Ege University. The researchers developed the “The Sociodemographic Form “used in the study by based on a comprehensive literature review and previous research experiences. The form was used according to expert opinion.

Results: The study included 120 eligible patients, of whom 71.2% were girls. The mean age (±SD) at disease onset was 13.6±2.2 years, while the mean age at the time of the study was 15.7±1.5 years. Most of the participants were high school students (84.2%), and 53.3% resided in metropolitan areas. All participants were receiving disease-modifying therapy. The study found that 67.5% of the children had school absenteeism due to the disease. Furthermore, 75% of the children experienced supratentorial symptoms, with 50% presented with optic symptoms, and 37.5% exhibiting brainstem symptoms prior to diagnosis. Drug-related side effects were reported in 58.3% of children. Additionally,99.2% of the children received information about the disease. Furthermore, 75% of the children experienced challenges during the disease and treatment process. Among these children who encountered difficulties, 52.5% reported psychological problems, 42.5% experienced side effects due to medication, 42.5% had difficulty accessing accurate and sufficient information about disease and treatment management, 32.5% encountered social and school-related issues, and 5.8% had concerns related to the clinical environment.

Conclusion: Childhood multiple sclerosis is more prevalent among girls, particularly in the relapsing- remitting form. The most commonly used treatments for pediatric multiple sclerosis include interferon beta-1a and glatiramer acetate. The findings of this study indicate that a significant proportion of participating children encountered challenges during the disease and treatment process, with more than half experiencing drug-related side effects. These challenges underscore the potential negative impact on treatment adherence in this population.