Health−related quality of life (HRQL) of children and adolescents following encephalitis and its relationship with everyday memory and executive function: Parent/carer report
0910, RES, Research Project, UofN: 4073827, UofL: 07091800 Page 1 of 200
Abstract
Objective- Following encephalitis, children can experience neuropsychological, psychological and medical consequences, making health-related quality of life (HRQL) of particular interest in this clinical population. To explore this under-researched topic area, this study was designed to investigate whether a relationship exists between the two most frequently reported neuropsychological consequences of childhood encephalitis (parent/carer reported executive function and everyday memory problems) and parent/carer reported HRQL. In addition, it explored to what extent these and other illness specific factors are predictors of parent/carer reported HRQL in children following encephalitis.
Design- The study took an exploratory cross-sectional design. Parametric and non-parametric correlations were employed to test the primary hypotheses and consider whether further illness-specific factors were related to parent/carer reported HRQL. Those variables found to correlate significantly with parent/carer reported HRQL were entered into a multiple linear regression to consider how predictive they were of HRQL.
Method- Thirty-eight parents/carers of children/adolescents, aged eight – 15 years old, who had a history of encephalitis responded to an invitation to take part. Participants were recruited through the Encephalitis Society‟s database of families with children/adolescents who had been diagnosed with encephalitis at
0910, RES, Research Project, UofN: 4073827, UofL: 07091800 Page 2 of 200
any time during childhood. Each parent/carer completed a Pediatric Quality of Life InventoryTM (PedsQLTM), a Behaviour Rating Inventory of Executive Function (BRIEF), a Children‟s Memory Questionnaire (CMQ), and a demographic/illness specific questionnaire in relation to their child. Parents/carers of potential participants were sent a recruitment pack by post and asked to return the measures in a stamped addressed envelope should they wish to take part. Where possible, children/adolescents were asked to provide their assent to take part and their parent/carer was asked to provide their consent to provide information in relation to their child.
Results- Parent/carer reported everyday memory problems and executive function impairment were found to significantly negatively correlate with parent/carer reported HRQL. Further exploratory analysis found that sleep difficulties significantly correlated with parent/carer reported HRQL, while age at time of illness and diagnosis of epilepsy did not correlate significantly with parent/carer reported HRQL. Through a forced entry multiple linear regression analysis, combined parent/carer reported everyday memory, executive function and sleep difficulties were found to account for up to 71% of the variance of parental-reported HRQL, with everyday memory being the most statistically significant predictor.
Conclusions- Frequently reported neuropsychological impairments following childhood encephalitis are found to relate significantly to parent/carer reportedHRQL. This indicates important implications for children, and their families, following encephalitis, and suggests areas for specific intervention and rehabilitation. The finding of a significant relationship between parent/carer reported sleep difficulties and parent/carer reported HRQL is consistent with findings in general, and other health condition, populations. The finding of no significant relationship between the variables of age at time of illness, diagnosis of epilepsy and parent/carer reported HRQL is inconsistent with studies in other clinical populations, and warrants further investigation. Consideration of the findings, and their implications for clinical practice, are discussed. Consideration is given to the small sample size and recommendations for further research are proposed
