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Article Challenges Faced by Pediatric Patients With Multiple Sclerosis During Disease Progression and Treatment: A Multicenter Cross-Sectional Study in Turkiye(Asean Neurological Assoc, 2025) Yuksel, Didem; Yardimci, FigenBackground & 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 T & uuml;rkiye 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.Article Barriers to and Facilitators of Phosphate Control in Children with CKD(Elsevier Science Inc, 2025) Mcalister, Louise; Shaw, Vanessa; Pugh, Pearl; Joyce, Triona; Snauwaert, Evelien; Bathgate, Fionna; Lambert, KellyIntroduction: Managing mineral and bone disorder in children with chronic kidney disease (CKD) requires control of serum phosphate levels. However, hyperphosphatemia is common, particularly in adolescents, reflecting suboptimal adherence to phosphate-binder medications and a reduced phosphate diet. We explored phosphate-related knowledge and adherence barriers in children, and their caregivers, using a sequential explanatory mixed-methods study design. Methods: Children aged 8 to 18 years with CKD stages 4 and 5, on dialysis or post-transplantation, and caregivers, were recruited from 3 UK pediatric kidney centers. The Phosphate Understanding and Knowledge Assessment questionnaire was used to assess knowledge. Online focus groups explored real-world challenges to phosphate control. Results: Forty-eight children and 43 caregivers were recruited; 44 (92%) children and 33 (75%) caregivers completed the questionnaire. Median knowledge scores were 64.3% (interquartile range, 55.3-78.6) for children and 72.7% (interquartile range, 64.3-85.7) for caregivers (P = 0.04). Older children scored higher (P = 0.01, R 2 = 0.13), but knowledge did not correlate with serum phosphate. Dietary restriction was perceived as more challenging than using phosphate-binders (59% children; 71% caregivers). Forty-six participants, including 30 child-caregiver dyads, joined focus groups. The following 5 themes were identified encapsulating the experiences of families: practical advice and support are valued; personalized strategies are preferred to facilitate sense-making; the social environment of the child and family is disrupted; education and self-management skills can influence success; and the journey requires acceptance, adaptation, and perseverance. Conclusions: In pediatric CKD, poor adherence to phosphate advice originates more from social and practical barriers than knowledge deficits. Our findings can inform personalized strategies to improve adherence in real-world settings.
