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

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

doi:10.2471/blt.09.071357

Cited by 57 publications

(38 citation statements)

References 23 publications

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“…Liverpool Outcome score (LOS) ; The LOS is a simple validated tool for assessing functional impairment in children following acute encephalitis [31]. The LOS includes questions about the functional impairment of the child, comparing their child's function to community peers of the same age [31].…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2013

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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.

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Section: Methodsmentioning

confidence: 99%

“…The LOS includes questions about the functional impairment of the child, comparing their child's function to community peers of the same age [31]. The child's outcome classification is defined by their lowest score achieved for any of the 15 domains assessed.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2013

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“…CSF results were available in 157 (96%) patients, and EEG reports from the first week of admission were available in 130 (79%) patients. We obtained follow-up information by telephone interview in 144 (88%) cases in 2011 and 2012 by using the Liverpool Outcome Score (LOS) questionnaire, 10 supplemented by clinical records. All patients were followed up for a minimum of 12 months after encephalitis, and the LOS was recorded as follows: 1 = death, 2 = severe, 3 = moderate, 4 = mild, and 5 = normal, and specific domains of abnormal outcome were also recorded.…”

Section: Clinical Data During Acute Encephalitismentioning

confidence: 99%

Infectious and Autoantibody-Associated Encephalitis: Clinical Features and Long-term Outcome

et al. 2015

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BACKGROUND AND OBJECTIVES: Pediatric encephalitis has a wide range of etiologies, clinical presentations, and outcomes. This study seeks to classify and characterize infectious, immunemediated/autoantibody-associated and unknown forms of encephalitis, including relative frequencies, clinical and radiologic phenotypes, and long-term outcome.METHODS: By using consensus definitions and a retrospective single-center cohort of 164 Australian children, we performed clinical and radiologic phenotyping blinded to etiology and outcomes, and we tested archived acute sera for autoantibodies to N-methyl-D-aspartate receptor, voltage-gated potassium channel complex, and other neuronal antigens. Through telephone interviews, we defined outcomes by using the Liverpool Outcome Score (for encephalitis).RESULTS: An infectious encephalitis occurred in 30%, infection-associated encephalopathy in 8%, immune-mediated/autoantibody-associated encephalitis in 34%, and unknown encephalitis in 28%. In descending order of frequency, the larger subgroups were acute disseminated encephalomyelitis (21%), enterovirus (12%), Mycoplasma pneumoniae (7%), N-methyl-D-aspartate receptor antibody (6%), herpes simplex virus (5%), and voltage-gated potassium channel complex antibody (4%). Movement disorders, psychiatric symptoms, agitation, speech dysfunction, cerebrospinal fluid oligoclonal bands, MRI limbic encephalitis, and clinical relapse were more common in patients with autoantibodies. An abnormal outcome occurred in 49% of patients after a median follow-up of 5.8 years. Herpes simplex virus and unknown forms had the worst outcomes. According to our multivariate analysis, an abnormal outcome was more common in patients with status epilepticus, magnetic resonance diffusion restriction, and ICU admission. CONCLUSIONS:We have defined clinical and radiologic phenotypes of infectious and immunemediated/autoantibody-associated encephalitis. In this resource-rich cohort, immune-mediated/ autoantibody-associated etiologies are common, and the recognition and treatment of these entities should be a clinical priority. WHAT'S KNOWN ON THIS SUBJECT:Encephalitis is a serious and disabling condition. There are infectious and immune-mediated causes of encephalitis, but many cases remain undiagnosed. WHAT THIS STUDY ADDS:This large single-center study on childhood encephalitis provides insight into the relative frequency and clinicoradiologic phenotypes of infectious, autoantibody-associated, and unknown encephalitis. Risk factors for an abnormal outcome are also defined. 4 and a prospective study of adults (n = 134) and children (n = 69) with encephalitis found that infectious encephalitis and immunemediated forms were identified in 42% and 21% of the cohort, respectively. 5 However, most of the previous larger studies of encephalitis in children were undertaken before the advent of neuronal autoantibody testing. [6][7][8] We studied clinical and radiologic features, serum autoantibodies in acute archived samples, and longterm outcomes in a large ret...

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“…If, however, very detailed assessments are undertaken, an even higher rate of more subtle cognitive disorders is found to be present. Many families report that their children suffer from impairment of memory, are not doing as well at school and are socially withdrawn to varying degrees (Lewthwaite et al 2010a). A simple scoring system, the Liverpool outcome score (Table 1 and available at http://www.webcitation.org/65R5BbmkF), has been developed to assess the degree of impairment after JE (or any other form of encephalitis) (Lewthwaite et al 2010a).…”

Section: Outcomementioning

confidence: 99%

“…Many families report that their children suffer from impairment of memory, are not doing as well at school and are socially withdrawn to varying degrees (Lewthwaite et al 2010a). A simple scoring system, the Liverpool outcome score (Table 1 and available at http://www.webcitation.org/65R5BbmkF), has been developed to assess the degree of impairment after JE (or any other form of encephalitis) (Lewthwaite et al 2010a). This score was developed in Asia and is specifically designed for use in low resource settings and to be adaptable across different cultural norms, a significant problem when designing neurological assessment scales which have a large cognitive component due to the variability in important factors like quality of education between populations.…”

Section: Outcomementioning

confidence: 99%

Viral Infections of the Human Nervous System

Jackson¹

2013

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

Cited by 57 publications

References 23 publications

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

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

Infectious and Autoantibody-Associated Encephalitis: Clinical Features and Long-term Outcome

Viral Infections of the Human Nervous System

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