Feasibility of mobile phone application "Epilepsy care" for self-management of children and adolescents with epilepsy in Phramongkutklao hospital: A randomized controlled trial.

Epilepsy is a common neurological disorder in children. Mobile applications have shown potential in improving self-management for patients with chronic illnesses. To address language barriers, we developed the first Thai version of the "Epilepsy care" mobile application for children and adolescents with epilepsy in Thailand. A prospective, randomized controlled trial with 220 children and adolescents living with epilepsy who had a smartphone and were treated at the pediatric neurology clinic was conducted, with one group using the mobile application and the other receiving standard epilepsy guidance. The primary outcome assessed epilepsy self-management using the Pediatric Epilepsy Self-Management Questionnaire (PEMSQ) in the Thai version, which comprised 27 questions. These questions aimed to determine knowledge, adherence to medications, beliefs about medication efficacy, and barriers to medication adherence. The secondary outcome evaluated seizure frequency at baseline, 3, and 6 months after initiation of an application. Eighty-five participants who were randomized to a mobile application achieved significantly higher PEMSQ scores in the domain of barriers to medication adherence (p < 0.05) at 6 months follow-up. Other domains of PEMSQ showed no statistically significant difference. Baseline median seizure frequencies per month were 7 in the control group and 5.5 in the intervention group. At 3 and 6 months, these decreased significantly to 1.5 and 1 for the control group and 2.5 and 1 for the intervention group (p < 0.001). In addition, the study revealed that 94.9 % of the participants in a mobile application group were highly satisfied with using application. These findings suggest that the mobile application "Epilepsy care" may serve as an effective adjunctive therapy to enhance self-management and seizure control in children and adolescents with epilepsy.

Lived experiences, perceived positive outcomes, and post-traumatic growth among parents with children with epilepsy: A qualitative study.

Childhood-onset epilepsy alters the everyday life of parents who have children or adolescents with epilepsy (CAWE). The aim of this qualitative study was to explore the experiences of Greek parents with CAWE, including perceived positive outcomes in their lives, where research in this area is limited. Fifteen parents took part in semi-structured interviews which were conducted online due to the social distancing measures imposed by the COVID-19 pandemic. Main results showed that parents with CAWE experience stress, somatic symptoms, mood swings, fear along with feelings of anger, and a sense of injustice. Positive outcomes were identified at a personal level, in parenting skills, and in achieving family cohesion. Parents reported that they had achieved increased personal strength, new perspectives, better life appreciation, and changes in their spiritual beliefs. Moreover, they mentioned the acquisition of new parenting skills which helped them become better caregivers as well as feeling more united with other family members. The changes that parents identified are discussed in relation to aspects of the Post-Traumatic Growth construct, and future recommendations and implications for practice are proposed.

Self-concept and gender effects in Korean adolescents with epilepsy.

PURPOSE: We aimed to determine whether adolescents with epilepsy (AWE) have a compromised self-concept, whether a lower self-concept is related to mental health, and whether there are sex differences in self-concept in AWE. METHODS: A total of 179 AWE and 259 control adolescents without epilepsy participated in this cross-sectional, multicenter study. Self-concept was measured using the Harter's Self-Perception Profile for Children. Depressive symptoms and anxiety were assessed by the Hospital Anxiety Depression Scale (HADS). A group-by-sex interaction was evaluated using an analysis of covariance controlling for age. RESULTS: Adolescents with epilepsy had a lower level of self-concept, especially in domains of behavioral conduct (partial eta(2): 0.257) and social acceptance (partial eta(2): 0.116), than controls (p<0.05). The level of self-concept did not differ by sex in the group with epilepsy. A group-by-sex interaction effect was found on social acceptance (p=0.042). Unlike the control group, age was not correlated with self-concept in AWE. Physical appearance was negatively correlated with HADS-anxiety scores (r=-0.291, p<0.01) but only in girls with epilepsy. Epilepsy duration was correlated with social acceptance in boys (r=0.211, p<0.05) and physical appearance in girls (r=-0.249, p<0.05). CONCLUSIONS: Adolescents with epilepsy had a lower level of self-concept, especially in the domains of behavioral conduct and social acceptance, than controls. Sex differences in self-concept were identified in the control group but not in the group with epilepsy. Physical appearance was negatively correlated with anxiety in girls with epilepsy.

Family factors contributing to emotional and behavioral problems in Korean adolescents with epilepsy.

PURPOSE: We aimed to determine whether different aspects of family functioning are associated with emotional and behavioral problems in adolescents with epilepsy and, if not, to document any indirect associations mediated by other family factors. METHODS: This was a cross-sectional, multicenter study. A total of 297 adolescents with epilepsy and their parents participated. Adolescent psychopathology was measured using the Youth Self-Report. Family factors were classified into proximal (parent-child interaction), distal (parent characteristics), and contextual factors (family characteristics) in accordance to their level of proximity to the adolescent's everyday life. Regression analyses were used to analyze the unique and combined predictive power of family factors in relation to psychopathology. RESULTS: In total, 44 (14.8%) and 51 (17.2%) adolescents with epilepsy scored above the borderline cutoff (T-score ≥ 60) of internalizing and externalizing problems, respectively. Proximal and distal factors were independently associated with both internalizing and externalizing problems. High levels of parental depressive mood and parental overcontrol were the strongest factors contributing to internalizing and externalizing problems, respectively. Contextual factors were indirectly associated with both internalizing and externalizing problems through more proximal factors. CONCLUSIONS: Both proximal and distal family factors affect psychopathology in Korean adolescents with epilepsy. Parental feelings of depression and parental overcontrol are the strongest factors contributing to internalizing and externalizing problems, respectively.

Determinants of felt-stigma in adolescents with epilepsy: Is it the same story?

PURPOSE: The present study aimed to investigate previously researched variables in adult people with epilepsy (PWE), which include felt stigma, perceived overprotection, concealment of epilepsy, and epilepsy-related concerns for adolescents with epilepsy (AWE). Another goal was to determine the reported levels of these variables and explore the relationships among them, as well as their associations with demographic and clinical factors. Additionally, we also investigated whether clinical and demographic variables create significant changes in these variables. Lastly, we aimed to determine the variables that predict felt-stigma in AWE. METHODS: On hundred and nineteen AWE aged between 10 and 18 were included in the study by using convenience sampling. Participants received the scales and demographic information form either in face to face meeting or via a Zoom session. RESULTS: Nearly half of the participants stated high level of felt stigma, perceived overprotection and concealment of epilepsy, while more than half reported concerns about their future/occupational prospects. Also, felt stigma had significant relations with concealment of epilepsy and concerns related to epilepsy. Early adolescents were under more risk for perceived overprotection, while late adolescents had higher concerns related to future/occupation. Females reported more felt stigma. Finally, felt stigma was predicted by concealment, concerns related to future/occupation, and concerns related to social life. CONCLUSION: The variables that explain the felt-stigma in AWE appear to be quite similar to those in adult PWE.

Altered functional network connectivity and working memory dysfunction in adolescents with epilepsy.

Adolescents with epilepsy are at risk for deficits in working memory, which could lead to learning difficulties and poor academic outcomes. We used task-based functional magnetic resonance imaging (fMRI) to examine potential disruption in working memory function in adolescents with epilepsy as compared to healthy controls. We recruited 29 adolescents (13-17 years) with non-lesional epilepsy and 20 healthy controls. All participants performed an N-back fMRI task and neuropsychological testing. A general linear model approach was used to create group activation maps of N-back fMRI for epilepsy and control groups and both groups combined (p < 0.05 corrected for multiple comparisons). Functionally defined regions of interest (ROIs) were identified based on clusters of combined group activation (z > 5). Subsets of these functional ROIs corresponding to cingulo-opercular and fronto-parietal networks were selected and differences in functional connectivity between the epilepsy and control groups were assessed. Adolescents with epilepsy had significantly poorer working memory scores compared to controls. For the N-back fMRI task, there were no significant differences in group activation. Functional connectivity was significantly reduced between the left frontal operculum and anterior cingulate gyrus (cingulo-opercular network) in adolescents with epilepsy compared to controls. This study demonstrates working memory deficits and an altered pattern of connectivity in brain networks supporting working memory in adolescents with epilepsy. Working memory performance was worse in adolescents with epilepsy; though scores were not directly correlated with reduced connectivity. These results suggest the neural substrates of working memory in adolescents with epilepsy may differ from those in typically-developing adolescents, and require further investigation to understand the reasons for poorer working memory performance.

The formative design of Epilepsy Journey: A web-based executive functioning intervention for adolescents with epilepsy.

This case study discusses the design, development, and formative evaluation of Epilepsy Journey, an individually-tailored, web-based intervention designed to address the unique executive functioning (EF) needs of adolescents with epilepsy. This intervention was designed through a three-phase iterative, patient-centered participatory action research process. First, a front-end analysis was completed to identify the unique needs of adolescents with epilepsy and initial design ideas via focus groups. Second, a preliminary design of the intervention was developed from focus group results. Finally, we iteratively incorporated revisions and refinements based on patient-centered feedback collected during usability sessions. Findings based on usage analytics, user reports, and coded qualitative themes from usability sessions suggest that our iterative, patient-centered approach to design, development, and evaluation resulted in a visually appealing interactive and brief intervention that is both engaging and individually tailored to the needs of adolescents with epilepsy.

Systemic Family Therapy of Comorbidity of Anxiety and Depression with Epilepsy in Adolescents.

OBJECTIVE: The aim of this study was to find if systemic family therapy (SFT) does work in anxiety and depression with epilepsy in adolescents (ADAE). METHODS: 104 adolescents with epilepsy, aged 13-20 years old, were included from December 2009 to December 2010, the enrolled patients were with anxiety [Hamilton Anxiety Scale (HAMA) score ≥14 points] or depression [Hamilton Depression Scale (HAMD) score ≥20 points]. The patients were randomly divided into the control group (n=52) treated with antiepileptic drugs (AED) and the intervention group (n=52) undergone Systemic Family Therapy (SFT) as well as AED. The AED improvements, anxiety and depression scores, Social Support Rating Scale (SSRS), Family Assessment Device (FAD) and scale of systemic family dynamics (SSFD) were observed after 3-month treatment. RESULTS: The frequencies of epileptic seizures in intervention group was decreased much more significantly than the control group (4.22±3.54 times/month vs. 6.20±5.86 times/month, p=0.04); and the scores of anxiety (9.52±6.28 points vs. 13.48±8.47 points, p=0.01) and depression (13.86±9.17 points vs. 18.89±8.73 points, p=0.02) were significantly decreased than the control group; meanwhile, the family dynamics and family functions were significantly improved, and the social support was also increased (p<0.05). CONCLUSION: SFT combined with AEDs had better efficacies than AEDs alone, not only the frequency of epileptic seizures was decreased, but also the patients' anxiety and depression were improved, and the family dynamics, family functions and social support were improved.

Parental concerns towards children and adolescents with epilepsy in Sri Lanka--Qualitative study.

PURPOSE: Social, cultural, psychological and many other factors significantly impact the lives of epileptic children and their families. Parental concerns towards their children are less known in south Asian children with epilepsy. We aimed to identify the parental concerns regarding their children and adolescents with epilepsy in Sri Lanka. METHODS: We carried out qualitative study in 3 districts of Sri Lanka, comprising 16 in-depth interviews with parents of children and adolescents with epilepsy and 3 focus group discussions with primary caregivers of epileptic children and key informants (schoolteachers, public health staffs). Content analysis of the interview data was performed. RESULTS: Parental concerns were spread among seven themes that emerged from the content analysis. These concerns were about the child's functioning in areas such as physical, behavioural, psychological and social, education, concerns related to anti-epileptic therapy and epilepsy as a disease. Parents were more concerned about their child's safety, educational achievements and future prospects in terms of employment and marriage. Unpredictability of seizures, fear of stigma and unawareness of epilepsy were the main reasons voiced by the parents for having such concerns. Increased concern and perception of vulnerability was seen among parents whose children had epilepsy and co-morbid illness. CONCLUSIONS: Parental concerns towards their children and adolescents show a multidimensional construct. Unpredictability of seizures, fear of stigma and unawareness of epilepsy were identified as key influential factors in moulding the parental concerns.

Systemic Family Therapy of Comorbidity of Anxiety and Depression with Epilepsy in Adolescents

OBJECTIVE: The aim of this study was to find if systemic family therapy (SFT) does work in anxiety and depression with epilepsy in adolescents (ADAE). METHODS: 104 adolescents with epilepsy, aged 13-20 years old, were included from December 2009 to December 2010, the enrolled patients were with anxiety [Hamilton Anxiety Scale (HAMA) score ≥14 points] or depression [Hamilton Depression Scale (HAMD) score ≥20 points]. The patients were randomly divided into the control group (n=52) treated with antiepileptic drugs (AED) and the intervention group (n=52) undergone Systemic Family Therapy (SFT) as well as AED. The AED improvements, anxiety and depression scores, Social Support Rating Scale (SSRS), Family Assessment Device (FAD) and scale of systemic family dynamics (SSFD) were observed after 3-month treatment. RESULTS: The frequencies of epileptic seizures in intervention group was decreased much more significantly than the control group (4.22±3.54 times/month vs. 6.20±5.86 times/month, p=0.04); and the scores of anxiety (9.52±6.28 points vs. 13.48±8.47 points, p=0.01) and depression (13.86±9.17 points vs. 18.89±8.73 points, p=0.02) were significantly decreased than the control group; meanwhile, the family dynamics and family functions were significantly improved, and the social support was also increased (p<0.05). CONCLUSION: SFT combined with AEDs had better efficacies than AEDs alone, not only the frequency of epileptic seizures was decreased, but also the patients' anxiety and depression were improved, and the family dynamics, family functions and social support were improved.

Calidad de vida en niños y adolescentes con epilepsia / Quality of life in children and adolescents with epilepsy

Introducción: La epilepsia es una enfermedad crónica que se origina en el cerebro debido a descargas neuronales anormales. Este padecimiento no respeta geografía, raza, sexo o condición social, teniendo en ocasiones graves consecuencias psicológicas, sociales y económicas. Objetivos: Evaluar la calidad de vida de niños y adolescentes con epilepsia y describir factores que pueden incidir en la calidad de vida de estos pacientes. Métodos: se realizó un estudio descriptivo de corte transversal en el cual se emplearon técnicas cuantitativas y cualitativas como el cuestionario y la entrevista en profundidad. Se trabajó con 22 pacientes comprendidos entre las edades pediátricas de 6 a 13 años que asisten a la consulta de neurología del Hospital William Soler. Resultados: se demostró que el nivel de calidad de vida que predomina en los niños y adolescentes con epilepsia estudiados es bueno, se evidenció que la categoría calidad de vida es el resultado de la compleja interacción entre lo social y lo psicológico y que factores tales como el tipo de epilepsia, edad de debut y tiempo transcurrido desde la última crisis, pueden incidir en la calidad de vida de estos pacientes. Conclusiones: la calidad de vida que predomina en los niños y adolescentes con epilepsia estudiados es buena. El aprendizaje es el parámetro de mayor afectación en estos pacientes, mientras que la autonomía resultó ser el de mejor resultado(AU)

Introduction: Epilepsy is a chronic disease that originates in the brain due to abnormal neuronal discharges. This ailment does not respect geography, race, gender or social condition, sometimes with severe psychological, social and economic consequences. Objectives: To evaluate the quality of life of children and adolescents with epilepsy and to describe factors that may affect the quality of life of these patients. Methods: It was conducted a descriptive study of cross section in which quantitative and qualitative techniques were used, like the questionnaire and the interview in depth. We worked with 22 patients ranging from the pediatric ages of 6 to 13 years attending the consultation of neurology of William Soler Hospital. Results: it was demonstrated that the level of quality of life that predominates in the studied children and adolescents with epilepsy is good, it was proved that the category quality of life is the result of the complex interaction between the social and the psychological and factors such as the type of epilepsy, age of debut and time elapsed since the last crisis, may affect in the quality of life of these patients. Conclusions: the quality of life that predominates in the studied children and adolescents with epilepsy is good. Learning is the parameter most affected in these patients, while autonomy proved to be the best result(AU)