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

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dc.contributor.authorLiu, Elina
dc.contributor.authorTwilt, Marinka
dc.contributor.authorTyrrell, Pascal N
dc.contributor.authorDropol, Anastasia
dc.contributor.authorSheikh, Shehla
dc.contributor.authorGorman, Mark
dc.contributor.authorKim, Susan
dc.contributor.authorCabral, David A
dc.contributor.authorForsyth, Rob
dc.contributor.authorVan Mater, Heather
dc.contributor.authorLi, Suzanne
dc.contributor.authorHuber, Adam M
dc.contributor.authorStringer, Elizabeth
dc.contributor.authorMuscal, Eyal
dc.contributor.authorWahezi, Dawn
dc.contributor.authorToth, Mary
dc.contributor.authorDolezalova, Pavla
dc.contributor.authorKobrova, Katerina
dc.contributor.authorRistic, Goran
dc.contributor.authorBenseler, Susanne M
dc.date.accessioned2018-11-26T10:14:36Z
dc.date.available2018-11-26T10:14:36Z
dc.date.issued2018-11-20
dc.date.updated2018-11-26T10:14:36Z
dc.description.abstractAbstract 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.
dc.identifier.citationPediatric Rheumatology. 2018 Nov 20;16(1):73
dc.identifier.doihttps://doi.org/10.1186/s12969-018-0291-4
dc.identifier.urihttp://hdl.handle.net/1880/109196
dc.identifier.urihttps://doi.org/10.11575/PRISM/44237
dc.language.rfc3066en
dc.rights.holderThe Author(s).
dc.titleHealth-related quality of life in children with inflammatory brain disease
dc.typeJournal Article
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