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

Abstract

BackgroundOver 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 FindingsChildren (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/SignificanceProlonged 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.

Imaging in Encephalitis

“…JEV is responsible for numerous cases of encephalitis worldwide, is associated with a high mortality rate (up to 30%), and the majority of surviving children suffer from functional impairment, especially in behavior, language, and limb use. 77,78 In one series of over 100 children in Malaysia, those with poor outcome at hospital discharge were more likely to have experienced seizures before or at hospital admission, to have a faster heart rate, to have required intubation, to have a reduced Glasgow coma score, and to have abnormal motor signs. 79 Despite the prevalence and severity of JE, however, neuroimaging biomarkers have not been well characterized.…”

Association of clinical features of acute viral encephalitis with mortality and neurodevelopmental outcomes

“…Michael J et al showed similar findings in there study that there was significant association between mortality and low income group (P < 0.01). 13 29(66%) patients had Glasgow Coma Score < 8 on admission reflecting impaired consciousness at the time of presentation, which had significant association(P=0.02) with outcome, 9(53%) patients of follow up completed group had Glasgow Coma Score < 8 on admission and all the 11(100%) patients (Ta b le-1) who died had Glasgow Coma Scale < 8 on admission. In this study there was no association between duration of fever with outcome.…”

Long-Term Outcomes and Socioeconomic Impact of Japanese Encephalitis and Acute Encephalitis Syndrome in Uttar Pradesh, India

“…Two of the cases had JE, but none of the ones with non-JE AES died after discharge from hospital. The only other studies that compared outcomes in JE and non-JE AES were the ones by Griffiths et al, (2013) (20) and Rayamajhi et al, (2007) (21). Both of the studies were from Nepal.…”