Assessment of Parental Perception of the Health of Children with Demyelinating Diseases

Pediatric demyelinating diseases of the central nervous system present with heterogeneous neurological impairments and varying clinical courses, often requiring long-term monitoring, immunological evaluation, and multidisciplinary care. The study aims to assess parental perceptions of their child’s health, symptom burden, comorbidities, exacerbation triggers, and access to rehabilitation among children with demyelinating diseases, and to examine associations between key clinical factors and functional outcomes.Methods. A cross-sectional survey was conducted among parents of 34 children aged 4–18 years hospitalized at Aksai University Clinic. A 39-item questionnaire was developed in accordance with international guidelines and pilot-tested for clarity. Statistical analysis included descriptive statistics, calculation of 95% confidence intervals (CI), and assessment of associations using odds ratios (OR) and Fisher’s exact test.Results.Neurological symptoms were highly prevalent, including coordination impairment (35.3%), visual disturbances (23.5%), speech disruption (17.6%), sensory deficits (14.7%), and pelvic dysfunction (5.9%). Most children (82.4%, 95% CI: 69.6–95.2) had a history of infections, and respiratory illnesses were common (53.0%). Infections were identified as the leading trigger of exacerbations (35.3%, 95% CI:19.7–52.8), followed by non-adherence to medical recommendations (26.5%). Functional limitations affected 81% of children. Infection history was significantly associated with functional impairment (OR=3.1, 95% CI: 1.2–7.9; p=0.021), as was the presence of≥2 neurological symptoms (OR=4.5, 95% CI: 1.1–18.2; p=0.047).Conclusion.Parental reports demonstrate pronounced multisystem involvement, elevated infection burden, and high rates of functional limitations in children with demyelinating diseases. These findings underscore the need for robust infection-prevention strategies, improved support for treatment adherence, standardized referral pathways, and expanded, continuous rehabilitation services for affected children. Keywords:pediatric demyelinating diseases,pediatric multiple sclerosis,parental perception,symptom reporting,quality of life,functional outcomes,care pathways.