The Functional, Social and Economic Impact of Acute Encephalitis Syndrome in Nepal – a Longitudinal Follow-Up Study

Background: Over 133,000 children present to hospitals with Acute Encephalitis Syndrome (AES) annually in Asia. Japanese encephalitis (JE) accounts for approximately one-quarter of cases; in most cases no pathogen is identified and management is supportive. Although JE is known to result in neurological impairment, few studies have examined the wider impact of JE and AES on patients and their families. Methodology/Principal Findings: Children (aged 1 month–14 years) with AES were assessed 5–12 months after discharge from two Nepali hospitals. Assessment included clinical examination, the Liverpool Outcome Score (LOS) - a validated assessment of function following encephalitis, questionnaires about the child's social participation since discharge, and out-of-pocket costs to the family. Children were classified as JE or ‘other AES’ based on anti-JE virus antibody titres during acute illness. Contact was made with the families of 76% (73/96) of AES children. Six children had died and one declined participation. 48% (32/66) reported functional impairment at follow-up, most frequently affecting behaviour, language or limb use. Impairment was more frequent in JE compared to ‘other AES’ cases (68% [13/19] versus 40% [19/47]; p = 0.06). 49% (26/53) had improvement in LOS between discharge and follow-up. The median out-of-pocket cost to families, including medical bills, medication and lost earnings was US$ 1151 (10 times their median monthly income) for children with severe/moderate impairment and $524 (4.6 times their income) for those with mild/no impairment (P = 0.007). Acute admission accounted for 74% of costs. Social participation was limited in 21% of children (n = 14). Conclusions/Significance: Prolonged functional impairment was common following AES. Economic impact to families was substantial. Encouragingly, almost half the children improved after discharge and most reported sustained social participation. This study highlights a need for long-term medical support following AES. Rationalisation of initial expensive hospital treatments may be warranted, especially since only supportive treatment is available. Author Summary: More than 133,000 children present annually to hospitals in Asia with clinical features of acute brain infection (Acute Encephalitis Syndrome [AES]). Japanese encephalitis accounts for one-quarter of cases in Asia. With no specific treatments for AES, management is largely supportive. AES commonly causes neurological problems. However, few studies have examined long-term outcome or the economic cost of AES. We followed up 72 Nepali children 5–12 months after acute hospital admission for AES and studied their neurological function, social participation and the out-of-pocket costs to the family. At follow-up, 6 children had died and 48% of survivors had impaired function. Behaviour, language or limb impairments were common. Encouragingly, almost half the children reported improved function at follow-up compared to hospital discharge. The economic impact was substantial; $1151 US dollars (10 times their monthly income) among families with children suffering severe/moderate impairment. Acute admission represented 74% of total costs. Few families reported limitations in their child's social participation. The functional problems experienced by these children highlights their need for long-term medical support. The substantial economic costs to families suggest rationalisation of acute care costs may be warranted. Families reported their child maintaining social participation, implying a positive attitude to social engagement.