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Published on: June 30, 2014
Health-related quality of life is reduced in pediatric multiple sclerosis
Ellen M Mowry1, Laura J Julian, Sunny Im-Wang
1Multiple Sclerosis Center, Department of Neurology, University of California, San Francisco, San Francisco, California 94117, USA. ellen.mowry@ucsf.edu
Insights
Children with multiple sclerosis (MS) and clinically isolated syndrome (CIS) experience significantly poorer health-related quality of life compared to healthy peers. Neurologic disability is a key factor impacting their quality of life.
Area of Science:
- Pediatric Neurology
- Quality of Life Research
- Child Health
Background:
- Multiple sclerosis (MS) and clinically isolated syndrome (CIS) can significantly impact a child's well-being.
- Assessing health-related quality of life (HRQoL) is crucial for understanding the comprehensive impact of these conditions in pediatric populations.
Purpose of the Study:
- To compare the HRQoL of children with MS/CIS to healthy siblings and children with other neurologic conditions.
- To identify factors associated with reduced HRQoL in pediatric MS/CIS.
Main Methods:
- The Pediatric Quality of Life Inventory Version 4.0 was used to assess HRQoL in children with MS/CIS and their parents.
- Data were collected from patients at the UCSF Regional Pediatric Multiple Sclerosis Center.
- Scores were compared with those of siblings and children with neuromuscular diseases.
Main Results:
- Children with MS/CIS and their parents reported significantly worse overall HRQoL compared to siblings.
- Psychosocial scores for pediatric MS/CIS were similar to those with neuromuscular diseases.
- Greater neurologic disability predicted lower self-reported HRQoL; parents reported worse HRQoL for girls, older children, and those with longer disease duration.
Conclusions:
- Children with MS/CIS experience substantial reductions in HRQoL, though generally better than those with chronic neuromuscular diseases.
- Neurologic disability is a primary determinant of diminished HRQoL in pediatric MS/CIS.
- Disease duration, sex, and age also influence parental perceptions of HRQoL.
Abstract:
The health-related quality of life of children with multiple sclerosis was compared with that of healthy children and of those with other neurologic diseases. The Pediatric Quality of Life Inventory Version 4.0 was administered to children with multiple sclerosis and clinically isolated syndrome and their parents (proxy reporters) at the University of California, San Francisco (UCSF), Regional Pediatric Multiple Sclerosis Center. Scores were compared with those of siblings and to those of children seen at the UCSF Pediatric Muscular Dystrophy Association Center. After adjustment for age and sex, children with multiple sclerosis or clinically isolated syndrome (P = 0.003) and their parents (P = 0.001) reported worse overall health-related quality of life than their siblings. Although overall scores for those with early multiple sclerosis or clinically isolated syndrome were better than for children with neuromuscular disease, their self-reported psychosocial scores were similar. The main predictor of reduced self-reported health-related quality of life among children with multiple sclerosis or clinically isolated syndrome was greater neurologic disability, whereas parents reported worse scores for girls, older children, and those with longer disease duration. Although it is better than for children with chronic neuromuscular diseases, children with multiple sclerosis or clinically isolated syndrome have substantial reductions in health-related quality of life.
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