Quality of life in children with epilepsy: The role of parental mental health and sleep disruption.

BACKGROUND: Parents of children with epilepsy (CWE) are at increased risk of mental health difficulties including anxiety and depression, as well as sleep difficulties. From both the child's and parent's perspectives, health-related quality of life has been shown to be strongly related to parental mental health. However, there is no literature on parental sleep as a predictor of child health-related quality of life. The role of parental variables has been assessed in relation to epilepsy-specific variables (e.g., seizure severity, anti-seizure medications) and how these relate to health-related quality of life, but prior studies have failed to consider the role of co-occurring conditions which are prevalent in CWE. The current study aims to assess how common anxiety symptoms, depression symptoms and sleep problems are in parents of CWE; and to determine the impact these parental variables as well as child co-occurring conditions have on health-related quality of life in CWE. METHODS: 33 CWE aged 4-14 years old were recruited from two hospitals and parents were asked to complete a series of questionnaires assessing both child and parental variables. RESULTS: It was found that 33.3 % and 12.0 % of parents of CWE experienced clinically significant anxiety and depression symptoms respectively. In addition 67.9 % of parents presented with significant sleep problems. In initial analysis, parental anxiety symptoms, depression symptoms and sleep problems were all significantly predictive of child health-related quality of life. However when co-occurring child sleep problems and neurodevelopmental characteristics were included, parental variables were no longer significantly predictive of child health-related quality of life. CONCLUSION: These results suggest that child co-occurrences mediate the relationship between parental variables and child health-related quality of life. The current data highlight the need for a systemic approach to epilepsy management and suggest that support for co-occurrences could benefit health-related quality of life for children and their parents.

Sleep and functional outcomes in children and adolescents with epilepsy: A scoping review.

AIM: In children and adolescents with epilepsy (CAWE), disturbed sleep and functional difficulties are frequently present, but their relationship is unclear. In this scoping review we aimed to explore associations between sleep and functional outcomes in CAWE. METHOD: We registered the protocol with open science framework and conducted the review according to the PRISMA Extension for Scoping Reviews. We searched Medline, Embase, PsycINFO and PubMed for original studies reporting on relations between sleep and functional outcomes (adaptive/quality of life, behavioural/mood, cognitive & academic) in CAWE. To assess the quality of studies we used an extended version of the checklist employed by Winsor and colleagues [1]. RESULTS: We identified 14 studies that included 1,785 CAWE and 1,260 control children, with a mean age of 9.94 and 10.13 years, respectively. The studies were highly heterogeneous with respect to samples, epilepsy variables, and methods used to assess sleep and functional outcomes. The quality of studies was medium. Associations between sleep and adaptive/quality of life, behavioural/mood, cognitive and academic outcomes were examined in 2, 10, 6, and 0 studies, respectively. Across studies, in CAWE, greater sleep disturbances were related to worse behavioural/mood outcomes, ranging from depression/anxiety to ADHD symptoms. Sleep disturbances did not consistently relate to cognitive outcomes, but they related to worse adaptive outcomes in both studies that examined their relationship. CONCLUSIONS: Our study provides evidence of relationship between disturbed sleep and behavioural/mood difficulties, which alerts to the need for careful evaluation and treatment of sleep disturbances in CAWE. Our study also highlights the need to examine relationships between sleep and other functional outcomes in CAWE, as studies conducted in the general population suggest that sleep disturbances may be modifiable and associated with improved functional outcomes.

Mental health and neurodevelopmental patient-reported outcome measures (PROMs) for children and young people with epilepsy: A systematic review.

Children and young people with epilepsy are at higher risk of mental health disorders and atypical neurodevelopmental outcomes compared to the general population. It is essential to detect such comorbidities early in children with epilepsy and provide appropriate interventions, to improve clinical outcomes. We aimed to identify and evaluate the measurement properties of Patient-Reported Outcome Measures (PROMs) that have been validated specifically to measure mental health and neurodevelopmental outcomes in children and/or young people with epilepsy. We searched Embase, Medline, and PsycINFO in May 2023 for relevant studies. Mental health was defined as psychological symptoms (e.g., anxiety, depression, psychosis) and/or behavioural difficulties (e.g., conduct disorders). Neurodevelopmental outcomes included neurodevelopmental disorder traits such as attention-deficit hyperactivity disorder (ADHD) and autistic spectrum disorders. We assessed methodological quality using Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidance. Twelve papers were identified that psychometrically evaluated 13 relevant PROMs (two epilepsy-specific, eleven generic). The appraisal of the PROMs was limited by the availability of only one or two published articles for each, and incomplete psychometric evaluations in some cases. The tool demonstrating the strongest evidence was The Neurological Disorders Depression Inventory-Epilepsy for Youth. The ADHD Rating Scale-IV and The Paediatric Symptom Checklist -17 demonstrated good evidence in favour of at least two measurement properties. This review identified only a small number of mental health and neurodevelopmental PROMs evaluated specifically in paediatric epilepsy. There is a need for further validation of mental health and neurodevelopmental PROMs in children with epilepsy.

Study protocol for a case series: implementation and evaluation of an integrated mental and physical healthcare programme to screen for mental health symptoms in people with epilepsy.

INTRODUCTION: The prevalence of mental health symptoms in people with epilepsy (PWE) is elevated compared with that of the general population. These symptoms can negatively impact epilepsy management and patient outcomes but can be treated once recognised. It is, therefore, important to screen for these symptoms to identify needs and put in place appropriate support. Unfortunately, mental health symptoms are rarely addressed in epilepsy services due to time constraints, lack of resources and communication between psychological and medical professionals. These barriers can result in diagnostic overshadowing, where symptoms may be attributed to the disease and reduce the level of support PWE receive. Implementing an online screening tool embedded in the electronic health record (EHR) platform with supported referral pathways may remove some of these barriers. METHODS AND ANALYSIS: We will follow the Integrating Mental and Physical Healthcare: Research Training and Services framework, which is a routine clinical data collection tool used by clinical teams to electronically screen psychological symptoms among patients with long-term physical health conditions. Patient outcomes including mental health, physical health and psychosocial outcomes will be collected and uploaded to the EHR platform in real-time. An appropriate referral pathway will be recommended depending on severity of the outcome scores. We will initially pilot the tool for individuals aged 13 years and above through epilepsy clinics at King's College Hospital. Following this, the acceptability and feasibility of the tool will be assessed at baseline, 6 and 12 months. ETHICS AND DISSEMINATION: Ethics approval was obtained from the National Health Service Research Ethics Committee of South Central-Oxford C, reference: 21/EM/0205. This study is expected to inform the use of integrated electronic mental health screening for youth in epilepsy clinics and improve access to psychological support. The findings will be disseminated through academic peer-reviewed journals, poster presentations and scientific meetings.

The contribution of sleep and co-occurring neurodevelopmental conditions to quality of life in children with epilepsy.

BACKGROUND: Health-related quality of life (HRQOL) in children with epilepsy (CWE) is multifactorial and can be affected not only by epilepsy-specific variables but also co-occurring conditions such as sleep disturbances, autism, and attention deficit hyperactivity disorder (ADHD). While highly prevalent in CWE, these conditions are underdiagnosed despite having a significant impact on HRQOL. Sleep problems have a complex relationship with epilepsy and neurodevelopmental characteristics. However, little is known about how these issues interact and contribute to HRQOL. OBJECTIVES: The current study aims to explore the relationship between sleep and neurodevelopmental characteristics on HRQOL in CWE. METHODS: 36 CWE aged 4-16 years old were recruited from two hospitals and asked to wear an actiwatch for a period of 14 days and caregivers completed a series of questionnaires assessing co-occurrences and epilepsy-specific variables. RESULTS: A high proportion of CWE (78.13%) presented significant sleep problems. Informant-reported sleep problems were significantly predictive of HRQOL above seizure severity and the number of antiseizure medications. Interestingly, informant-reported sleep problems were no longer significantly predictive of HRQOL when neurodevelopmental characteristics were considered, indicating a possible mediating effect. Similarly, actigraphy-defined sleep (variability in sleep onset latency) displayed a similar effect but only for ADHD characteristics, whereas autistic characteristics and variability in sleep onset latency continued to exert an individual effect on HRQOL. CONCLUSION: These data from our study shed light on the complicated relationship between sleep, neurodevelopmental characteristics and epilepsy. Findings suggest that the impact of sleep on HRQOL in CWE is possibly mediated by neurodevelopmental characteristics. Furthermore, the impact this triangular relationship exerts on HRQOL is dependent on the type of tool used to measure sleep. These findings highlight the importance of a multidisciplinary approach to epilepsy management.

The influence of disease course and surgery on quality of life in children with focal cortical dysplasia and long-term epilepsy-associated tumours: A systematic review and meta-analysis.

INTRODUCTION: Carefully selected patients with lesional epilepsy, including focal cortical dysplasia (FCD) and long-term epilepsy-associated tumours (LEAT), can benefit from epilepsy surgery. The influence of disease course and subsequent epilepsy surgery on quality of life (QoL) and intelligence quotient (IQ) is not well understood. METHODS: A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Studies reporting QoL or IQ measures in paediatric patients with FCD and LEAT at epilepsy onset, at establishment of drug resistance (pre-operative/non-surgically managed) and post-operatively were included. To evaluate the "effect size" and clinical significance of surgery, a meta-analysis of the data was conducted using fixed effects models for weighted mean differences, 95% confidence intervals and sensitivity analyses. RESULTS: Nineteen eligible studies (911 patients) were included, 17 assessing IQ and 2 evaluating QoL. Twelve studies reported preoperative and postoperative IQ measures and five reported IQ in non-surgically managed cohorts after drug resistance was established; no papers reported IQ at epilepsy onset. No significant IQ/DQ changes were detected after surgery (pre-operative pooled mean 69.32; post-operative pooled mean 69.98; p = 0.32). Age at epilepsy surgery, type of surgery and epilepsy-related pathology did not influence the post-operative IQ. QoL was reported in 2 studies with the pooled mean estimates for pre- and post-operative QoL being 42.52 and 55.50, respectively. CONCLUSIONS: The present study demonstrated no statistical change in IQ and QoL following surgery in paediatric patients with FCD and LEAT. There was no data on IQ and QoL at disease onset. Attempting to understand the impact of epilepsy, ongoing seizures and surgery on IQ and QoL will facilitate planning of future studies that aim to optimise quality of life and developmental outcomes in these children. Studies assessing children at epilepsy onset with longitudinal follow-up are required to optimise the timing of epilepsy surgery on QoL and IQ.

Child witness expressions of certainty are informative.

Children are frequently witnesses of crime. In the witness literature and legal systems, children are often deemed to have unreliable memories. Yet, in the basic developmental literature, young children can monitor their memory. To address these contradictory conclusions, we reanalyzed the confidence-accuracy relationship in basic and applied research. Confidence provided considerable information about memory accuracy, from at least age 8, but possibly younger. We also conducted an experiment where children in young (4-6 years), middle (7-9 years), and late (10-17 years) childhood (N = 2,205) watched a person in a video and then identified that person from a police lineup. Children provided a confidence rating (an explicit judgment) and used an interactive lineup-in which the lineup faces can be rotated-and we analyzed children's viewing behavior (an implicit measure of metacognition). A strong confidence-accuracy relationship was observed from age 10 and an emerging relationship from age 7. A constant likelihood ratio signal-detection model can be used to understand these findings. Moreover, in all ages, interactive viewing behavior differed in children who made correct versus incorrect suspect identifications. Our research reconciles the apparent divide between applied and basic research findings and suggests that the fundamental architecture of metacognition that has previously been evidenced in basic list-learning paradigms also underlies performance on complex applied tasks. Contrary to what is believed by legal practitioners, but similar to what has been found in the basic literature, identifications made by children can be reliable when appropriate metacognitive measures are used to estimate accuracy. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Sleep disruption in children and adolescents with epilepsy: A systematic review and meta-analysis.

This systematic review and meta-analysis aims to assess and quantify putative differences in sleep architecture, sleep efficiency, sleep timing and broadly-defined sleep difficulties between children with and without epilepsy. Databases were searched systematically, and studies identified in PubMed, EMBASE, PsychINFO and Medline. The meta-analysis included 19 studies comparing a total of 901 children with epilepsy to 1470 healthy children. Relative to healthy children, children with epilepsy experienced reduced sleep time, sleeping on average 34 mins less across self-report, actigraphy, 24-h video-EEG and polysomnography measures. They had more sleep difficulties specifically in the domains of night waking, parasomnias and sleep disordered breathing. The analysis also revealed a significantly increased percentage of N2 sleep and decreased sleep efficiency in children with epilepsy compared to healthy children. These results illustrate that children with epilepsy are vulnerable to more sleep difficulties compared to healthy children. This suggests that screening for sleep difficulties should be an integral part in a diagnosis of epilepsy to ensure that clinically relevant sleep difficulties are identified and treated. Such an approach may ultimately aid in the development of treatment strategies which can contribute to improvements in both developmental and diagnostic outcomes for children with epilepsy.