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Table 1.

Local Research Ethics Committees and Research from the participating centres which granted approval for the study to be carried out.

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Figure 1.

Study Profile.

* These patients were 4 years old or younger and no appropriate tool could be found to appropriately assess their HRQoL. ** One 14 year-old patient completed the SF-36 and two completed the SF-10. † These patients were unable to self-complete as their functioning following encephalitis was so significantly impaired.

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Table 2.

Sample Characteristics in those Eligible for the SF-36.

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Table 3.

Sample Characteristics in those Eligible for the SF-10.

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Figure 2.

Mean norm-based SF-36 scores for patients after encephalitis compared to the age-and sex-matched general UK population.

Scores have been transformed so that the general population scores a mean of 50, with a standard deviation of 10 in each domain; accordingly any score less than 50 is worse than that for the general population. Comparison is made between different aetiological categories and with a survey conducted by the Encephalitis Society in the UK of their adult members with previous self-reported encephalitis [15]. The vertical error whiskers represent the standard deviation for the overall scores for each domain. PF = Physical functioning, RP = role limitation caused by physical dysfunction, BP = bodily pain, GH = general health perceptions, VT = vitality, SF = social functioning, RE = role limitations caused by emotional difficulties, MH = mental health perceptions.

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Figure 3.

Caterpillar Plot of Estimated Regression Coefficients on Mean Post-encephalitis HRQoL norm based scores.

Associated factors are listed along the left axis, with the reference characteristic quoted within parentheses as appropriate. Point estimates (circles) and 95% credibility intervals (whiskers) of each regression coefficient are enumerated along the right axis. Thus, having a co-morbid illness is expected to reduce the norm-based SF-36 score by 1.9 points averaged across all domains, (95% credibility interval −4.69 –0.11 points) compared to those with no co-morbidity. As per Bayesian analysis the percent figures by each whisker indicate the posterior probability of the corresponding regression coefficient being greater or less than zero: the closer the percent value for a given parameter to 100% the greater the portion of its posterior probability mass lies to one side of zero (equivalent to an indication of statistical significance); conversely values closer to 50% indicate proximity to an equal split of the posterior distribution between positive and negative values (indicating a lack of statistical significance).

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Table 4.

Comparison of proportions of patients reporting a good, moderate and bad HRQoL on the SF-36 with aetiological category and with level of recovery as assessed by the Glasgow Outcome Score (GOS).

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Figure 4.

SF-10 scores for a Post-encephalitic Population aged 5–14 years compared with an equivalent US Population Norm [7].

It was necessary to use US-based data for comparison as no equivalent UK normative dataset exists. Scores have been transformed so that the general population scores a mean of 50, with a standard deviation of 10 in each domain; so that any score less than 50 is worse than that for the general population. The vertical bars represent the standard deviation. PHS = physical summary scale, PSS = psychosocial summary scale.

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