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

Table 2 Clinical phenotypes and outcomes for 145 pediatric patients with inflammatory brain disease

Clinical phenotypes at diagnosis
Presenting symptoms
Cognitive Dysfunction	91 (63%)
Seizures	65 (45%)
Hemiparesis	64 (44%)
Disease activity
Number of patients with disease activity measurements	116 (80%)
Median (Range)	8.0 (0–10)
Estimated damage
Number of patients with estimated damage measurements	98 (68%)
Median (Range)	1.0 (0–8)
Poor health-related quality of life
Child’s self-reported	53% (18/34)
Parent’s proxy-reported	49% (19/39)
Outcomes
Survival	144/145 (99%)
Neurologic function at 1 year
Number of patients with neurologic function measurements	106 (73%)
Good	63/106 (59%)
Poor	43/106 (41%)
Poor health-related quality of life at 1 year
Child’s self-reported	34% (16/47)
Parent’s proxy-reported	35% (17/48)

Legend: Disease activity and estimated damage were measured using the physician global assessment (PGA). The PGA is measured on a continuous scale from 0 to 10, with 0 representing no disease activity/damage, and 10 representing severe disease activity/damage. Neurologic function was measured using the pediatric stroke outcome measure (PSOM), with the presence of significant dysfunction in any of the 5 subdomains (right sensorimotor, left sensorimotor, language production, language comprehension and cognitive/behavioural deficit) indicating poor neurologic function

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