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

Danielle Hebert, Cheryl Geisthardt, Holly Hoffman

Research output: Contribution to journalArticlepeer-review

7 Scopus citations

Abstract

Forty-two parents of 41 children reported on their experiences receiving a diagnosis of pediatric-onset multiple sclerosis for their child through semistructured phone interviews. Time to diagnosis ranged from 8 hours to 16 years, with the mean age at diagnosis of 13.7 years. The most common initial symptoms included visual disturbances and numbness. The mean number of medical visits to receive a diagnosis was 3.6. Parents reported feeling frustrated and overwhelmed during the diagnosis process, as well as shocked when told their child had multiple sclerosis. Parents emphasized the need for more awareness of pediatric-onset multiple sclerosis. Numerous parents reported encountering physicians who believed multiple sclerosis did not occur in childhood, contributing to a longer time to diagnosis. Parents preferred physicians first share the diagnosis with the parents without the child present. Finally, parents appreciated when physicians provided a variety of resources to help them cope with the diagnosis.

Original languageEnglish
Pages (from-to)464-471
Number of pages8
JournalJournal of Child Neurology
Volume34
Issue number8
DOIs
StatePublished - Jul 1 2019

Keywords

  • diagnosis
  • parent recommendations
  • pediatric-onset multiple sclerosis

Fingerprint

Dive into the research topics of 'Insights and Recommendations From Parents Receiving a Diagnosis of Pediatric Multiple Sclerosis for Their Child'. Together they form a unique fingerprint.

Cite this