Related Experiment Video
Updated: Feb 2, 2026
Studying Brain Function in Children Using Magnetoencephalography
Published on: April 8, 2019
Health-related quality of life in children with inflammatory brain disease
Elina Liu1,2, Marinka Twilt3,4,5, Pascal N Tyrrell6
1Rheumatology, Department of Pediatrics, Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, AB, T3B 6A8, Canada.
Insights
Pediatric inflammatory brain diseases significantly reduce children's quality of life. Cognitive issues and seizures at diagnosis are linked to worse outcomes, highlighting the need for targeted interventions.
Area of Science:
- Pediatric Neurology
- Neuroinflammation
- Quality of Life Research
Background:
- Inflammatory brain diseases (IBrainD) in children can profoundly impact their well-being.
- Understanding the effect on health-related quality of life (HRQoL) is crucial for comprehensive care.
- Existing research often lacks detailed quantification of HRQoL deficits in this population.
Purpose of the Study:
- To quantify the impact of pediatric inflammatory brain diseases on health-related quality of life (HRQoL).
- To assess HRQoL across physical, emotional, school, and social functioning subdomains.
- To identify factors associated with diminished HRQoL in affected children.
Main Methods:
- Multicenter, observational cohort study including children (<18 years) diagnosed with IBrainD.
- Health-related quality of life assessed using the Pediatric Quality of Life Inventory Version 4.0 (PedsQL) Generic Core Scales.
- Linear regression models adjusted for repeated measures were used to analyze trends over time.
Main Results:
- 145 pediatric patients with IBrainD were included; 55% were female.
- Cognitive dysfunction (63%) was the most common symptom; childhood primary angiitis of the CNS (33%) was the most frequent diagnosis.
- At diagnosis, mean PedsQL scores were 68.4 (child-reported) and 63.4 (parent-reported), with 52.9% reporting poor HRQoL. Seizures or cognitive dysfunction at presentation correlated with significant HRQoL deficits.
Conclusions:
- Pediatric inflammatory brain diseases are associated with substantially reduced health-related quality of life.
- Children presenting with seizures and cognitive dysfunction experience particularly severe HRQoL deficits.
- Future research should investigate the underlying causes and develop targeted interventions to improve HRQoL in affected children.
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.
Related Concept Videos
01:30Inflammatory Bowel Disease II: Crohn's Disease
Inflammatory bowel disease, commonly known as IBD, refers to a collection of disorders that lead to persistent inflammation of the gastrointestinal tract. The two types of IBD are ulcerative colitis, which impacts the colon, and Crohn's disease, which can involve any part of the gastrointestinal segment.
Crohn's disease
Crohn's disease is a chronic, systemic inflammatory bowel disease (IBD) that predominantly affects the gastrointestinal tract. It is marked by...
01:27Inflammatory Bowel Disease I: Ulcerative Colitis
Inflammatory bowel disease, or IBD, encompasses a group of disorders characterized by chronic inflammation or ulceration of the gastrointestinal tract.
Risk Factors
The exact cause of IBD remains unclear, although it is believed to be due to a mix of genetic, environmental, microbial, and immune factors. Genetic factors are significant in determining susceptibility to IBD, with family history being a critical risk factor. Individuals with a first-degree relative who has IBD are at...
01:21Inflammatory Bowel Disease V: Surgical Management
Here are some common surgical interventions for IBD:
02:42Half-life of a Reaction
01:29Inflammatory Bowel Disease IV: Pharmacological Management
Pharmacologic...
01:23Characteristics of Life