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Publications
Publications (56)
The early introduction of a low phenylalanine (Phe) diet has been demonstrated to be the most successful treatment in subjects with phenylketonuria (PKU), especially for preventing severe cognitive and neurological damages. However, it still concerns that even if treated in the first months of life with supplements and following a diet, they can sh...
The early introduction of a low phenylalanine (Phe) diet has been demonstrated to be the most successful treatment in subjects with phenylketonuria (PKU), especially for preventing severe cognitive and neurological damages. However, it still concerns that even if treated in the first months of life with supplements and following a diet, they can sh...
The early introduction of a low phenylalanine (Phe) diet has been demonstrated to be the most successful treatment in subjects with phenylketonuria (PKU), especially for preventing severe cognitive and neurological damages. However, it still concerns that even if treated in the first months of life with supplements and following a diet, they can sh...
Introducción: La distrofia muscular de Duchenne (DMD) es una enfermedad neuromuscular genética ligada al cromosoma X, poco frecuente y caracterizada por un deterioro muscular progresivo. Afecta a la población infanto-juvenil, principalmente, y no tiene cura, por lo que la esperanza de vida es corta y acompañada de alteraciones psicosociales. Entre...
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 ser...
We conducted a systematic review of studies on mobile devices, including tablets, iPads, and smartphones, in teaching programs for young children with autism spectrum disorder (ASD). We conducted a search of the electronic databases (period 2002–2019) supplemented by a search for additional relevant articles by means of cross-referencing. In total,...
110 informal caregivers of children with MND from were recruited from various associations of affected persons of Spain (e.g., ASEM, BENE), Hospital of Basurto, and Hospital of Cruces. All caregivers were over 18 years of age, and the children in their care were under 18 years of age. A total of 91 women and 19 men participated, and the overall mea...
Introduction
Mucopolysaccharidosis type III (MPS III) or Sanfilippo syndrome is a neurodegenerative disease caused by the accumulation of mucopolysaccharides in the body. As the symptoms are wide ranging, it is a challenge to provide a diagnosis and psychological treatment for affected children.
Method
The main objective of this study was to descr...
Evaluar el perfil psicosocial de los cuidadores informales de pacientes con enfermedades poco frecuentes, que han descargado la aplicación móvil para cuidadores de enfermedades poco frecuentes AppER, en las siguientes variables: calidad de vida, nivel de dependencia, sintomatología somática, niveles de soledad, estrategias de afrontamiento y el efe...
This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospital...
Rare neuromuscular diseases (RNMDs) are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life (QoL) levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and soc...
Context
In recent years, the ketogenic diet has gained special relevance as a possible therapeutic alternative to some neurological and chronic diseases.
Objective
The aim of this systematic review was to answer the following question: Does a ketogenic diet improve cognitive skills in patients with Alzheimer's disease, Parkinson's disease, refract...
Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to char...
[Full text: https://rdcu.be/b1zlQ] Chiari malformation type I (CM-I) is a neurological disorder in which cerebellar tonsils are herniated through the foramen magnum into the spinal canal. A wide spectrum of cognitive deficits underlying this pathology has been reported, but the literature about social cognition is insufficient. Clinical research ha...
Background: Numerous studies have noted the presence of a dysexecutive component of the ALS-FTD. The most widely replicated result refers to the significantly reduced verbal fluency of ALS patients when compared to healthy people. As ALS patients have motor alterations that interfere with production, qualitative studies have the advantage of being...
Abstract
BACKGROUND:
Given the interactive media characteristics and intrinsically motivating appeal, virtual serious games are often praised for their potential for assessment and treatment.
OBJECTIVE:
This study aims to validate and develop normative data for a virtual serious game (Deusto-e-motion1.0) for the evaluation of emotional facial expr...
[Full text: https://rdcu.be/bJm3o]The involvement of the cerebellum in visuospatial abilities has been evidenced in numerous studies, based on the cerebellar-cortical circuitry. This domain has been evaluated in several patients with cerebellar disorders, but the assessment of visuospatial processing in Chiari malformation type I (CM-I) is scarce....
Background: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to char...
Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to cha...
Background : Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to cha...
About 30% of patients with amyotrophic lateral sclerosis (ALS) suffer from cognitive impairment and 10–15% suffer from frontotemporal dementia (FTD). Due to the patients’ reduced motor function, a neuropsychological assessment with a low motor demand can be an advantage when evaluating patients, aiding its application. The present work has studied...
This study aimed to create a valid and reliable instrument to measure people with disabilities' perceptions regarding the extent of application of international standards issued by the Council of Europe, International Labour Organization, and the International Classification of Functioning, Disability and Health in vocational rehabilitation centers...
UNSTRUCTURED
Given the interactive media characteristics and intrinsically motivating appeal, virtual serious games are often praised for their potential in assessment and treatment. The aim of this study is to validate a virtual serious game (e-motion1.0) in order to evaluate emotional facial expression recognition and social skills, components of...
Background
Given the interactive media characteristics and intrinsically motivating appeal, virtual serious games are often praised for their potential for assessment and treatment.
Objective
This study aims to validate and develop normative data for a virtual serious game (Deusto-e-motion1.0) for the evaluation of emotional facial expression reco...
Background. Previous studies have suggested an association of Chiari Malformation type I (CM-I) and cognitive deficits. CM-I is a neurological disorder characterized by a descent of cerebellar tonsils into the foramen magnum, resulting in overcrowding of the upper cervical spine region. Posterior fossa decompression (PFD) is the surgical treatment...
There are few studies that explore the involvement of the cerebellum in the affective area. This study aims to evaluate the
affective component and, specifically, the emotional states of depression and anxiety associated with the Chiari malformation,
controlling perceived pain. This study included a Chiari group and two control groups, one healthy,...
Abstract.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 alterationof 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 tota...
Purpose:
Chiari malformation (CM) Type I is a rare disorder that implies an anomaly in the craniocervical junction, where one or both cerebellar tonsils are displaced below the foramen magnum into the cervical spinal channel. Research carried out regarding cognitive symptoms such as verbal fluency is scarce. The aim of this study was to investigat...
[Full text: https://rdcu.be/Oong]
Chiari Malformation type I (CM-I) is a neurological disorder characterized by a displacement of the cerebellar tonsils through the foramen magnum into the spinal canal. Most research has focused on physical symptomatology but few studies include neuropsychological examinations. Moreover, although current research...
BACKGROUND: Vocational rehabilitation (VR) programs have previously been evaluated using classical measures (such as the percentage of successful disabled consumers who are served by an agency). However, recent evaluations of VR programs have emphasized the need to examine levels of consumer satisfaction with such programs, as it is important to in...
Español
La esclerosis lateral amiotrófica (ELA) es una enfermedad que irrumpe bruscamente en la vida de las personas afectadas y sus familiares. Además de las clásicas alteraciones motoras, pueden comprometerse aspectos clave como la cognición, la personalidad y el comportamiento. El carácter imprevisible de estos síntomas supone un desafío físico...
Objective:
This study presents the validation of a computerized assessment tool that studies the ability to recognize emotional facial expressions in children between 8 and 11 years of age: the Facially Expressed Emotion Labeling Test (FEEL Test).
Method:
The two tests composing the protocol were applied using a laptop in the following order: th...
Esta es una Guía práctica del Chiari y la Siringomielia que publica la Asociación Chiari y Siringomielia del Principado de Asturias (ChySPA) para que a través de ella puedas mejorar tu día a día en relación a tu enfermedad.
El objetivo de la realización de la guía es el de proporcionar a personas afectadas por Malformaciones Cráneo Cervicales alter...
One of the most crucial changing in the lives of students with physical disabilities is the transition from schools to the world of employment and life in the general society as an adult. Strengthening of self-reliance, development of interest, determining a professional track and pursuing either work or further studying are some only of challenges...
El presente trabajo repasa las principales dificultades del progreso de una enfermedad crónica en la infancia. Debido a que la edad escolar supone un importante hito en el desarrollo infantil, un abordaje integral que comprenda el aspecto psicosocial de los niños/as con enfermedades neuromusculares es uno de los principales retos de la educación ac...
The aim of this project is to validate e-motion, a serious game which evaluates facial recognition and empathy in 8-11 years old children through sections placed in virtual school settings.
El presente estudio pretende analizar la dominancia lateral y su influencia en la construcción del esquema corporal y la habilidad visuoespacial. Un total de 11 participantes entre 6 y 23 años de edad diagnosticados de Síndrome de Williams fueron valorados a través de 4 herramientas de evaluación: Test de Lateralidad de Harris, Figura Compleja de R...
Introduction:
Facial emotional expression constitutes a basic guide in the social interaction and, thus, the alterations in its expression or recognition imply an important limitation for the communication. On the other hand, cognitive impairment and the presence of depressive symptoms, which are commonly found in patients with multiple sclerosis,...
Antecedentes: La evidencia reciente sobre la materia sugiere que el Trastorno por Déficit de Atención e Hiperactividad (TDAH) es más común en niños con menor edad gestacional y/o bajo peso al nacer. Las investigaciones han demostrado que los prematuros o prematuros extremos tienen más riesgo a presentar los diferentes síntomas para este diagnóstico...
Rare neuromuscular diseases (NDs) are a group of inherited or acquired neurological pathologies affecting the muscles and the nervous system. Their low prevalence and high geographical dispersion can cause isolation and difficulties in social interaction between affected equals. New technologies, such as videoconferencing, offer a complementary opt...
Myasthenia is an autoimmune disease of neuromuscular transmission. This disease is typically characterised by muscle weakness, which is exacerbated by the performance of certain activities or exercise; patients usually recover with rest. Some studies have noted that people with myasthenia gravis have significantly higher depression scores than cont...
Acceso previsualización libro:
goo.gl/blRlSl
The assessment of facial expression is an important aspect of a clinical neurological examination, both as an indicator of a mood disorder and as a sign of neurological damage. To date, although studies have been conducted on certain psychosocial aspects of myasthenia, such as quality of life and anxiety, and on neuropsychological aspects such as m...
Resumen El objetivo del estudio es establecer si existen diferencias en el reconocimiento facial de emociones en grupos de niños con Trastorno por Déficit de Atención e Hiperactividad (TDAH) con diferentes niveles de agresividad. Se evaluaron a un total de 39 niños entre 8 y 12 años de edad divididos según el nivel de agresividad presentado. Se han...
Background: It is found the existence of deficits in emotional recognition of facial expressions
in children diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD). There is
evidence supporting that these deficits are associated with aggressive and / or antisocial
behavior. The aim of the study is to establish the differences in facial emot...
Background
Neuromuscular diseases are a group of pathologies characterized by the progressive loss of muscular strength, atrophy or hypertrophy, fatigue, muscle pain and degeneration of the muscles and the nerves controlling them (The French Muscular Dystrophy Association, 2004). Perceived isolation and health related quality of life are affected i...
Projects
Projects (2)
Guías dirigidas a pacientes diagnosticados de enfermedades raras y sus familiares editadas en colaboración con asociaciones de pacientes de España y Latinoamérica. Su objetivo es proporcionar consejos dirigidos a los pacientes y/o sus familiares que les permita afrontar los retos de la enfermedad o los tratamientos. Recogen diferentes temáticas, como las estrategias y habilidades de comunicación, los estilos de afrontamiento ante el estrés y la mejora de la calidad de vida psicosocial.
Un objetivo secundario es ayudar a los profesionales socio-sanitarios a reconocer las principales preocupaciones de los pacientes y sus familias a fin de mejorar su estilo de comunicación, reducir la ansiedad y la incertidumbre e incrementar el grado de adherencia a los tratamientos.
La metodología que se sigue en estas guías es la siguiente:
a. Revisión del estado actual de la cuestión, incluyendo literatura internacional sobre las siguientes cuestiones: estudios de calidad de vida, estrés psicológico, estilos de afrontamiento y eficacia de la intervención psicosocial (aspectos psicológicos y sociales) dirigidos al colectivo de pacientes y sus familiares.
b. Participación de grupos de expertos sobre aspectos psicosociales de diferente formación (académicos, clínicos y profesionales de los servicios sociales).
c. Realización de estudios piloto a través de la metodología del focus group con pacientes y familiares de España y Latinoamérica a través de encuentros presenciales u online. El objetivo es identificar las principales temáticas y necesidades.
d. Diseño de un cuestionario de evaluación de problemas psicosociales.
e. Administración del cuestionario presencial/online a una muestra representativa de pacientes y/o familiares.
f. Recogida de datos cualitativos en forma de narrativas agrupadas a partir de los temas principales.
g. Redacción y traducción de los textos en los que se ilustra cada apartado con los testimonios de los pacientes y/o sus familiares.
g. Edición y distribución de las Guías a través de las asociaciones, centros académicos y clínicos.
Guías editadas hasta el momento (ver apartado libros):
Guía Psicosocial de la Miastenia Gravis y Congénita
Guía de apoyo psicosocial para familias con hijos/as recién diagnosticados de enfermedad neuromuscular.
Guía práctica del Chiari y la Siringomielia
Guía de apoyo psicosocial para cuidadores: ELA/DFT (pendiente de publicación, 12 de junio)
Guía de apoyo psicosocial a familiares de personas afectadas por el Sindrome de Dravet (en fase de elaboración)
