Parental report of quality of life in children with epilepsy: A Spanish/French comparison

Alteraciones psicoemocionales asociadas a la epilepsia en pacientes pediátricos de 8 a 11 años de edad del Hospital Materno Infantil José Domingo de Obaldía

“…En general, la calidad de vida percibida por los niños y los padres muestra un detrimento global en la puntuación. Diversas investigaciones revelan que la epilepsia pediátrica tiene un impacto en la reducción de la percepción de la calidad de vida (López et al, 2010;Nadkarni et al, 2011;Conde et. al., 2020).…”

Assess of Maternal Practices on Quality of Life for Their Epileptic Children

“…The support and understanding of mothers of children with epilepsy are invaluable in helping develop ordinary living skills (Akbas and Kartal, 2022). Conde-Guzón et al (2020) argues that epilepsy is a chronic neurological illness has effects on the quality of life of the epileptic children and their families. It considered critical to evaluate the well-being and quality of life of epileptic children.…”

Psychometric properties of a Turkish version of the quality of life in childhood epilepsy questionnaire

“…Epilepsy is a neurological disease that requires long-term treatment and monitoring and causes significant restrictions in physical, emotional, intellectual, and social life that negatively affect the quality of life of the individual (Conway et al, 2016;Fayed et al, 2015). It is very important to evaluate the well-being and quality of life of children with epilepsy (Bilgiç et al, 2018;Conde-Guzón et al, 2020;Momen et al, 2019). Studies have emphasized that children with epilepsy have lower quality of life compared to their healthy peers due to factors, such as seizure attacks, frequency and severity of seizures, unpredictable time of seizures, side effects associated with antiepileptic drug (AEDs) treatment, and perceived stigma associated with epilepsy (De La Loge et al, 2016;Jovanovic et al, 2015;Love et al, 2016;Momen et al, 2019;Nagabushana et al, 2019).…”

“…Since the child-reported quality of life can vary, parent-reported quality of life should also be measured (Rajmil et al, 2004). Also, it is emphasized that parental reporting is as important as self-reporting of the child in the assessment of health-related quality of life, and it may be difficult for children who lack the necessary cognitive and linguistic skills to explain their difficulties or problems related to their chronic diseases; therefore, the necessity of parental reporting is highlighted in evaluating the quality of life (Conde-Guzón et al, 2020;Pukaa et al, 2020). Parents play a chief role both in the disease management process of the child with epilepsy and in coping with psychosocial problems (Lambert et al, 2014).…”

“…Parents play a chief role both in the disease management process of the child with epilepsy and in coping with psychosocial problems (Lambert et al, 2014). Parents, as supervisors, are at the center of the management of the disease as much as children, for example, at the time of diagnosis (family observations in determining the age of the onset of seizure and the type of seizure), in follow-ups (decisionmaking about medical/surgical treatment), and in the management of the seizure that the child can experience at any time (Conde-Guzón et al, 2020). Studies suggest that in the disease management of children with epilepsy, the health-related quality of life of children should be routinely evaluated from a parental perspective, so that the expectations of both the child and the parents will be understood more clearly and therapeutic assistance will be developed (Cianchetti et al, 2015).…”