Bulletin of the World Health Organization

Disability after encephalitis: development and validation of a new outcome score

Penny Lewthwaite, Ashia Begum, Mong How Ooi, Brian Faragher, Boon Foo Lai, Indunil Sandaradura, Anand Mohan, Gaurav Mandhan, Pratibha Meharwade, S Subhashini, Gulia Abhishek, Asma Begum, Srihari Penkulinti, M Veera Shankar, R Ravikumar, Carolyn Young, Mary Jane Cardosa, V Ravi, See Chang Wong, Rachel Kneen & Tom Solomon

Objective

To develop a simple tool for assessing the severity of disability resulting from Japanese encephalitis and whether, as a result, a child is likely to be dependent.

Methods

A new outcome score based on a 15-item questionnaire was developed after a literature review, examination of current assessment tools, discussion with experts and a pilot study. The score was used to evaluate 100 children in Malaysia (56 Japanese encephalitis patients, 2 patients with encephalitis of unknown etiology and 42 controls) and 95 in India (36 Japanese encephalitis patients, 41 patients with encephalitis of unknown etiology and 18 controls). Inter- and intra-observer variability in the outcome score was determined and the score was compared with full clinical assessment.

Findings

There was good inter-observer agreement on using the new score to identify likely dependency (Κ = 0.942 for Malaysian children; Κ = 0.786 for Indian children) and good intra-observer agreement (Κ = 1.000 and 0.902, respectively). In addition, agreement between the new score and clinical assessment was also good (Κ = 0.906 and 0.762, respectively). The sensitivity and specificity of the new score for identifying children likely to be dependent were 100% and 98.4% in Malaysia and 100% and 93.8% in India. Positive and negative predictive values were 84.2% and 100% in Malaysia and 65.6% and 100% in India.

Conclusion

The new tool for assessing disability in children after Japanese encephalitis was simple to use and scores correlated well with clinical assessment.

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