Evaluación y control de síntomas en oncología pediátrica: una necesidad que cubrir y un mundo por descubrir

Children with cancer experience symptoms related to illness and/or treatment. Symptom experiences in the child with cancer are individual, subjetive and they change over time. There is still much to be discovered about how children with cancer and their families experience childhood cancer symptoms. In this article, how children and their families experience symptoms is described, and the literature about some frequent symptoms experienced by child with cancer, including pain, fatigue and chemotherapy related nausea and vomiting, is reviewed, addressing psychological techniques used in the treatment of these symptoms. Finally, there is a reflexion about pediatric psychooncologist role in the assessment and management of physical symptoms in pediatric oncology patient, and about the need of research in symptom assessment and control

Evaluación y control de síntomas en oncología pediátrica: una necesidad que cubrir y un mundo por descubrir

Children with cancer experience symptoms related to illness and/or treatment. Symptom experiences in the child with cancer are individual, subjetive and they change over time. There is still much to be discovered about how children with cancer and their families experience childhood cancer symptoms. In this article, how children and their families experience symptoms is described, and the literature about some frequent symptoms experienced by child with cancer, including pain, fatigue and chemotherapy related nausea and vomiting, is reviewed, addressing psychological techniques used in the treatment of these symptoms. Finally, there is a reflexion about pediatric psychooncologist role in the assessment and management of physical symptoms in pediatric oncology patient, and about the need of research in symptom assessment and control

Reconocimiento de expresión facial emocional en el trastorno de déficit de atención e hiperactividad en la infancia

Abstract: Recognition of emotional facial expression in attention deficit/hyperactivity disorder in childhood. The main symptoms of attention deficit/hyperactivity disorder (ADHD) are inattention, hyperactivity and impulsivity. In addition to cognitive and behavioral deficits present in ADHD, having difficulties in social skills has also been observed in different studies. The objective of this study was to analyze performance in recognizing emotional facial expression in this group. For this, a clinical group with ADHD was compared to a control group. Emotional facial expression recognition tools were applied. No statistically significant differences were found between groups in non-contextualized static emotions. However, differences were found in non-contextualized dynamic emotions, contextualized scenarios and secondary social skills. In addition, a more comprehensive analysis identified a subgroup of children with ADHD that performed better than the other ADHD group of children and similarly to the control group.Resumen: Los síntomas principales del trastorno de déficit de atención/hiperactividad (TDAH) son la inatención, la hiperactividad y la impulsividad. Además de los déficits cognitivos y conductuales presentes en el TDAH, se ha observado en diferentes estudios la presencia de dificultades en las habilidades sociales. El objetivo de este estudio fue analizar el rendimiento en el reconocimiento de expresión facial emocional en este colectivo. Para ello, se comparó un grupo clínico con TDAH con un grupo control. Se emplearon herramientas de reconocimiento de expresión facial emocional. No se encontraron diferencias estadísticamente significativas en las emociones estáticas no contextualizadas entre los dos grupos. Sin embargo, sí se encontraron diferencias en las emociones dinámicas no contextualizadas, en escenarios contextualizados y habilidades sociales secundarias. Además, un análisis más exhaustivo identificó un subgrupo de niños con TDAH con un rendimiento similar al presentado por el grupo control y superior al resto de niños del grupo TDAH.

The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study

Caregivers’ emotions and finances are affected by the deterioration of functional capacity of patients with Duchenne muscular dystrophy (DMD), both in Mexico and Spain. Patient associations may reduce this impact on caregivers. This study aims to study the role of two models of associations, inspired by two different cultural models, in how the services they provide can help decrease the emotional and financial impact on the caregivers of children with DMD. The sample consisted of 34 caregivers from Mexico and 40 from Spain recruited from Spanish hospitals and rare disease organizations in Spain and Mexico. The instruments used consisted of a sociodemographic and socioeconomic questionnaire, the CarerQol-7D, the PHQ-15, the Zarit Caregiver’s Burden Scale and the SWLS. The results showed that caregivers in Mexico are in better physical and psychological health than caregivers in Spain. They also receive more subsidies than those in Spain. Caregivers in Mexico have a greater well-being and are less affected by the economic impact of the disease due to the associations’ day-to-day work and the fact that they generate a network of health services that they make available to the patient free of charge. These differences may also be attributable to cultural issues and to the fact that Mexico has a deeply established culture of support.This work was supported by a Grant from the Education Department of the Basque Government (BOPV, 13 July 2021) (PRE_2021_2_0007)

Revisión bibliográfica sobre la sintomatología cognitiva en la malformación de Chiari tipo I

Chiari malformation (CM) is a rare pathology with low prevalence. CM is within the group of malformations of the craniocervical junction, it is an anatomical alteration of the cranial base. There are considered to be 6 types of CM, being MC type I the most common one.  The symptomatology can be very varied, having been reported cases of totally asymptomatic patients and others with serious neurological affections. Furthermore, recent research shows that congenital pathologies of the cerebellum such as CM can be accompanied by neuropsychological deficits. It is difficult to diagnose it due to the complexity of the lesion and the symptoms present in patients. However, the diagnosis is made by neuroimaging techniques, being the most widely used technique the magnetic resonance. Regarding to treatment, surgery is one of the main actions to be carried out after the diagnosis of CM. This review presents an exhaustive analysis of the existing literature on the cognitive functions affected of type I MC. It also describes the effects of surgical treatments on neuropsychological symptoms. The results show the presence of cognitive deficits; however, there is no agreement about exactly what cognitive functions are affected.La malformación de Chiari (MC) es una patología rara de baja prevalencia y cuya patogenia actualmente sigue siendo objeto de debate. La MC está dentro del grupo de las malformaciones de la unión craneocervical, es una alteración anatómica de la base craneal. A día de hoy se considera que hay 6 tipos de MC, siendo la MC tipo I la más común. La sintomatología puede ser muy variada habiéndose reportado casos de pacientes totalmente asintomáticos y otros con graves afecciones de tipo neurológicas. Recientes investigaciones manifiestan que las patologías congénitas del cerebelo como la MC, pueden acompañarse de déficits neuropsicológicos. Es de difícil diagnóstico debido a la complejidad de la lesión y sintomatología presente en los pacientes. No obstante, el diagnóstico se realiza mediante técnicas de neuroimagen siendo la técnica más utilizada la resonancia magnética. En cuanto al tratamiento, la cirugía es una de las principales actuaciones a llevar a cabo ante el diagnóstico de MC. Esta revisión presenta un análisis exhaustivo de la literatura existente sobre las funciones cognitivas afectadas de la MC tipo I. Asimismo, realiza una descripción de los efectos de los tratamientos quirúrgicos en la sintomatología neuropsicológica. Los resultados evidencian la presencia de déficits cognitivos; sin embargo, no hay acuerdo sobre cuáles son exactamente las funciones cognitivas afectadas

Quality of Life of Latin-American People with Neuromuscular Disorders and Their Families During the COVID-19 Pandemic

Objectives: The COVID-19 pandemic has affected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods: A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results: The PedsQL indicated a mean of 55.85 (SD = 22.05) for children, and a mean of 55.76 (SD = 16.72) for caregivers. Adults reported a mean of 67 (SD = 22.5) for their general perception of quality of life, and a M = 53 (SD = 28.25) for their perception on health. Conclusions: The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population finds itself.Fil: Ortega, Javiera. Pontificia Universidad Católica Argentina "Santa María de los Buenos Aires". Facultad de Psicología y Psicopedagogía. Centro de Investigaciones en Psicología y Psicopedagogía; ArgentinaFil: Vázquez, Natalia. Universidad Austral. Facultad de Ciencias Biomédicas; Argentina. Fundación de Psicología Aplicada a Enfermedades Huérfanas; ArgentinaFil: Amayra Caro, Imanol. Universidad de Deusto. Facultad de Psicologia y Educacion. Neuroemotion.; Españ

Quality of life of latin‑american people with neuromuscular disorders and their families during the covid‑19 pandemic

Abstract: Objectives The COVID-19 pandemic has afected the entire population, especially the population with chronic diseases. This study aimed to describe the quality of life of children and adults with neuromuscular diseases and their caregivers during the COVID-19 pandemic. Methods A observational correlational study was conducted. Forty-seven participants, including adults with NMD and caregivers of children with NMD, took part in the study. The WHOQOL-BREF and PedsQL 4.0 GCS and FIM scales were used. Results The PedsQL indicated a mean of 55.85 (SD=22.05) for children, and a mean of 55.76 (SD=16.72) for caregivers. Adults reported a mean of 67 (SD=22.5) for their general perception of quality of life, and a M=53 (SD=28.25) for their perception on health. Conclusions The results showed regular to low quality of life of all children, adults, and caregivers, mainly in the physical dimension for people with neuromuscular diseases, and in the concerns dimension for caregivers. These results warn about the physical and psychological vulnerability situation in which this population fnds itself

Limb–Girdle Muscular Dystrophy D2 TNPO3-Related: A Quality of Life Study

The present study is the first research that analyzes the quality of life (QoL) of people affected by a dominant form of limb–girdle muscular dystrophy, specifically limb–girdle muscular dystrophy D2 (LGMD-D2). Additionally, clinical forms of the individual cases of the six affected patients are presented. This study also aims to explore the differences between patients’ reports and caregivers’ reports, and between LGMD-D2 and recessive forms of LGMD. The instruments used were as follows: sociodemographic data, GSGC, and INQoL instrument. The sample consisted of six people affected by LGMD-D2: three caregivers of three affected people, and three patients with recessive LGMD. They came from associations of affected people and a hospital in Padua. Those affected have multiple symptoms that lead to disability, which ultimately leads to dependence on the assistance. The present study shows that LGMD-D2 has a greater impact on activities of daily living, fatigue, muscle pain, and independence than other LGMD pathologies or other neuromuscular diseases. It also appears that age could influence QoL, and that muscle weakness is a very disabling symptom in this variant. In the current context of constantly developing research for new treatments, it is essential to analyze which aspects are most affected. Finally, caregivers can play an essential role in symptom reporting, as certain psychological adjustment mechanisms in the patient may be interfering with the objectivity of the report

Propiedades psicométricas de la versión en castellano del Cuestionario Calidad de Vida Pediátrica Módulo de Impacto Familiar (PedsQL FIM)

Resumen: Introducción: Este trabajo analiza las propiedades psicométricas de la versión en castellano del Cuestionario de calidad de vida pediátrica módulo de impacto familiar (PedsQL FIM) en población argentina. Pacientes y métodos: Se obtuvo una muestra de 232 cuidadores, 108 de ni˜nos con enfermedades crónicas (M = 9,54, DE = 4,43) y 124 de ni˜nos de población general (M = 12,37, DE = 4,6). Resultados: La validez del instrumento se estudió a través del método de grupos contrastados, encontrando diferencias significativas en la escala total y subdimensiones de la escala (p < 0,01). A su vez, se realizó un análisis factorial exploratorio en el que se encontró un modelo de 8 factores explicando el 74,02% de la varianza total. La confiabilidad fue estudiada a través del coeficiente alfa de Cronbach y se encontró un valor alto de consistencia interna = 0,95. Conclusiones: El instrumento PedsQL demostró ser una herramienta válida y confiable para estudiar el impacto que tiene una condición pediátrica crónica a nivel de la calidad de vida del cuidador y del funcionamiento familiar