Juvenile inflammatory brain disease is associated with significantly reduced health-related quality of life, according to data published in Pediatric Rheumatology.
“In pediatric populations especially, [health-related quality of life] has become an important central outcome,” Marinka Twilt, MD, MSCE, PhD, of Alberta Children’s Hospital, and colleagues wrote. “[Health-related quality of life] in children with [inflammatory brain disease] has not yet been systematically evaluated.”
To analyze the impact of pediatric inflammatory brain diseases on health-related quality of life — and how it relates physical, emotional, school and social functioning — Twilt and colleagues conducted a multicenter, observational cohort study of 145 children recruited from 13 international sites. All participants were aged 17 years or younger and diagnosed with inflammatory brain disease between August 2001 and August 2016. The study was part of BrainWorks, an international multicenter collaborative effort to increase recognition of, and promote diagnostic evaluation and improved treatment for, pediatric inflammatory brain disease.
Juvenile inflammatory brain disease is associated with significantly reduced health-related quality of life, according to data.
All participants had completed at least one Health Related Quality of Life Questionnaire, which was measured using the Pediatric Quality of Life Inventory Version 4.0 (PedsQL) Generic Core Scales. The researchers analyzed trends using linear regression models, adjusted for repeated measure over time. The primary outcome was pediatric health-related quality of life, defined by the PedsQL total score. Secondary outcomes included the health-related quality of life subdomains of physical, emotional, social and school functioning.
According to the researchers, 63% of participants demonstrated cognitive dysfunction, making it the most common presenting symptom. Small vessel childhood primary angiitis of the central nervous system was the most common diagnosis, affecting 33% of all participants. The mean self-reported PedsQL total score at diagnosis was 68.4, while the mean parent’s proxy-reported PedsQL score was 63.4. In addition, the children’s self-reported PedsQL scores demonstrated poor health-related quality of life in 52.9% of patients at diagnosis. At presentations, seizures or cognitive dysfunction were associated with statistically significant reductions in health-related quality of life.
“Future work should strive to improve the prognosis for children with [inflammatory brain disease], especially those presenting with risk factors for increased burden of disease,” Twilt and colleagues wrote. “Identification of patients with increased risk of poor [health-related quality of life] should be followed by the provision of targeted rehabilitation, which aims to improve functioning in the subdomains predicted to have weak recovery.” – by Jason Laday
Disclosure: Twilt reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.