Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child

Area of Science:

• Pediatric Neurology
• Neuroimmunology
• Childhood Multiple Sclerosis

Background:

• Pediatric-onset multiple sclerosis (MS) is a rare but serious autoimmune disease affecting children and adolescents.
• The diagnostic journey for pediatric MS is often complex, lengthy, and emotionally taxing for families.
• Limited awareness among healthcare professionals about MS occurring in childhood contributes to diagnostic delays.

Purpose of the Study:

• To explore parents' lived experiences and perspectives on the diagnostic process for pediatric-onset MS.
• To identify challenges, unmet needs, and areas for improvement in diagnosing childhood MS.
• To understand parental preferences regarding communication and support during the diagnostic journey.

Main Methods:

• Conducted semistructured phone interviews with 42 parents of 41 children diagnosed with pediatric-onset MS.
• Gathered data on time to diagnosis, age at diagnosis, initial symptoms, and number of medical visits.
• Explored parental emotional responses and perceptions of the healthcare encounters.

Main Results:

• Diagnosis time varied significantly (8 hours to 16 years), with a mean age at diagnosis of 13.7 years.
• Common initial symptoms included visual disturbances and numbness; the mean number of medical visits was 3.6.
• Parents experienced frustration, overwhelm, and shock; many encountered physicians unaware of childhood MS, prolonging diagnosis.

Conclusions:

• There is a critical need to enhance awareness of pediatric-onset MS among healthcare providers to shorten diagnostic delays.
• Parents prefer sensitive communication, with the diagnosis initially shared privately, followed by comprehensive resources.
• Improving the diagnostic pathway for pediatric MS is essential for timely intervention and better family support.