Health-related quality of life in children with inflammatory brain disease.

Journal Article (Journal Article;Multicenter Study)

OBJECTIVE: To quantify the impact of inflammatory brain diseases in the pediatric population on health-related quality of life, including the subdomains of physical, emotional, school and social functioning. METHODS: This was a multicenter, observational cohort study of children (< 18 years of age) diagnosed with inflammatory brain disease (IBrainD). Patients were included if they had completed at least one Health Related Quality of Life Questionnaire (HRQoL). HRQoL was measured using the Pediatric Quality of Life Inventory Version 4.0 (PedsQL) Generic Core Scales, which provided a total score out of 100. Analyses of trends were performed using linear regression models adjusted for repeated measures over time. RESULTS: In this study, 145 patients were included of which 80 (55%) were females. Cognitive dysfunction was the most common presenting symptoms (63%), and small vessel childhood primary angiitis of the CNS was the most common diagnosis (33%). The mean child's self-reported PedsQL total score at diagnosis was 68.4, and the mean parent's proxy-reported PedsQL score was 63.4 at diagnosis. Child's self-reported PedsQL scores reflected poor HRQoL in 52.9% of patients at diagnosis. Seizures or cognitive dysfunction at presentation was associated with statistically significant deficits in HRQoL. CONCLUSION: Pediatric IBrainD is associated with significantly diminished health-related quality of life. Future research should elucidate why these deficits occur and interventions should focus on improving HRQoL in the most affected subdomains, in particular for children presenting with seizures and cognitive dysfunction.

Full Text

Duke Authors

Cited Authors

  • Liu, E; Twilt, M; Tyrrell, PN; Dropol, A; Sheikh, S; Gorman, M; Kim, S; Cabral, DA; Forsyth, R; Van Mater, H; Li, S; Huber, AM; Stringer, E; Muscal, E; Wahezi, D; Toth, M; Dolezalova, P; Kobrova, K; Ristic, G; Benseler, SM

Published Date

  • November 20, 2018

Published In

Volume / Issue

  • 16 / 1

Start / End Page

  • 73 -

PubMed ID

  • 30458827

Pubmed Central ID

  • PMC6245877

Electronic International Standard Serial Number (EISSN)

  • 1546-0096

Digital Object Identifier (DOI)

  • 10.1186/s12969-018-0291-4


  • eng

Conference Location

  • England