Neurologic Features Associated With SARS-CoV-2 Infection in Children: A Case Series Report.

INTRODUCTION: Although multiple neurologic manifestations associated with SARS-CoV-2 infection have been described in adults, there is little information about those presented in children. Here, we described neurologic manifestations associated with COVID-19 in the pediatric population. METHODS: Retrospective case series report. We included patients younger than 18 years, admitted with confirmed SARS-CoV-2 infection and neurologic manifestations at our hospital in Santiago, Chile. Demographics, clinical presentations, laboratory results, radiologic and neurophysiological studies, treatment, and outcome features were described. Cases were described based on whether they presented with predominantly central or peripheral neurologic involvement. RESULTS: Thirteen of 90 (14.4%) patients admitted with confirmed infection presented with new-onset neurologic symptoms and 4 patients showed epilepsy exacerbation. Neurologic manifestations ranged from mild (headache, muscle weakness, anosmia, ageusia), to severe (status epilepticus, Guillain-Barré syndrome, encephalopathy, demyelinating events). CONCLUSIONS: We found a wide range of neurologic manifestations in children with confirmed SARS-CoV-2 infection. In general, neurologic symptoms were resolved as the systemic presentation subsided. It is essential to recognize and report the main neurologic manifestations related to this new infectious disease in the pediatric population. More evidence is needed to establish the specific causality of nervous system involvement.

Association of Initial Maximal Motor Ability With Long-term Functional Outcome in Patients With COL6-Related Dystrophies.

OBJECTIVE: To accurately categorize the phenotypes of individuals with collagen VI-related dystrophies (COL6-RDs) during the first years of life to predict long-term motor function and pulmonary function, to provide phenotype-specific anticipatory care, and to improve clinical trial readiness. METHODS: This retrospective, multicenter, international study analyzed the relationship of long-term motor and pulmonary function with the initial maximal motor ability achieved in individuals with COL6-RD. RESULTS: We studied 119 patients with COL6-RD from Spain (n = 54) and the United States (n = 65). The early maximal motor milestones of ability to rise from the floor unassisted and ability to climb 4 steps without holding onto a railing demonstrated reliability in distinguishing between 3 COL6-RD phenotypic subgroups: (1) Ullrich congenital muscular dystrophy, (2) intermediate COL6-RD, and (3) Bethlem myopathy. Long-term motor function and pulmonary function are strongly correlated with the maximal motor ability achieved during the first years of life. Maximal motor capacity can predict other disease-relevant events such as the age at loss of ambulation and the need for the initiation of nocturnal noninvasive ventilation. CONCLUSION: This work proposes a prospective phenotypic classification for COL6-RDs that will enable an accurate prediction of a patient's COL6-RD phenotype during the first years of life. The ability to establish a patient's COL6-RD phenotypic classification early will enable a more accurate prognosis of future motor and pulmonary function, thus improving anticipatory clinical care, and it will be instrumental in aiding the design of future clinical trials by allowing early stratification of trial cohorts.

Translation and cultural adaptation of the CLEFT-Q for use in Colombia, Chile, and Spain.

BACKGROUND: Cleft lip and/or palate (CL/P) is a common congenital craniofacial anomaly that may negatively affect an individual's appearance, health-related quality of life, or speech. In Spain, Colombia, and Chile the overall prevalence of CL/P ranges from 0.53 to 1.59 cases per 1000 live births. Currently, there is no patient-reported outcome (PRO) instrument that is specific for patients with CL/P. The CLEFT-Q is a new PRO instrument developed to measure outcomes of treatment in patients 8 to 29 years of age with CL/P. The aim of this study was to translate and culturally adapt the CLEFT-Q for use in Colombia, Chile, and Spain. METHODS: The CLEFT-Q was translated from English to 3 Spanish language varieties (Colombian, Chilean, and Spanish (Spain)) and Catalan. Translation and cultural adaptation guidelines set forth by the International Society for Pharmacoeconomics and Outcomes Research were followed. RESULTS: The field- test version of the CLEFT-Q consisted of 13 scales (total 154 items) measuring appearance, health-related quality of life, and facial function. Forward translations revealed 10 (7%) items that were difficult to translate into Chilean, and back translations identified 34 (22%) and 21 (13%) items whose meaning differed from the English version in at least 1 of the 3 Spanish varieties and Catalan respectively. Twenty-one participants took part in cognitive debriefing interviews. Participants were recruited from plastic surgery centres in Bogotá, Colombia (n = 4), Santiago, Chile (n = 7), and Barcelona, Spain (n = 10). Most participants were males (n = 14, 67%) and were diagnosed with CL/P (n = 17, 81%). Participants reported difficulty understanding 1 item in the Colombian, 1 item in the Spanish (Spain), and 11 items from the Catalan version. Comparison of the 3 Spanish varieties revealed 61 (40%) of the 154 items whose wording differed across the 3 Spanish versions. CONCLUSION: Translation and cultural adaptation processes provided evidence of transferability of the CLEFT-Q scales into 3 Spanish varieties and Catalan, as semantic, idiomatic, experiential, and conceptual equivalence of the items, instructions, and response options were achieved.

Experiencia en atención de salud integral y prevención en salud mental pediátrica: aplicación del modelo de atención de salud amigable / Integrated health care and prevention in pediatric mental health experience: application of friendly health care attention model

El siguiente artículo presenta la experiencia del Hospital Dr. Luis Calvo Mackenna en la implementación del “Modelo de Atención de Salud Amigable para Niños”. Esta nueva forma de atención propone que se debe satisfacer las necesidades individuales tanto del niño como de su familia, procurando reducir el miedo, la ansiedad y el sufrimiento que se produce debido a la atención de salud recibida. Para ello se realizó un estudio diagnóstico de tres de doce estándares de atención basados en los derechos del niño, a través de una metodología de evaluación y mejoramiento continuo, que permite monitorear sistemáticamente los avances de la instalación de prácticas amigables. Esta experiencia piloto se está desarrollando con el esfuerzo colectivo de un equipo de trabajadores sociales y psicólogos, cuyo desafío es promover la humanización de la atención de salud, objetivo considerado estratégico por nuestra organización.

The following article presents the experience of Dr. Luis Calvo Mackenna Hospital in the implementation of the "Child Friendly Healthcare Initiative Model". The model developed by Child Advocacy International (CAI), in collaboration with UNICEF, WHO, and the Royal Colleges of Pediatrics and Nursing of the United Kingdom, proposes that the pediatric health care must satisfy the individual needs of the child and his/her family assuming the responsibility of reducing the fear, the anxiety and the unnecessary suffering that takes place during and due to the health care. It proposes 12 standards based on the rights of the child and a methodology of evaluation and constant improvement, allowing a systematic progress monitoring of the installation of friendly practices. This pilot experience is developed with the collective effort of a team of social workers and psychologist of the hospital, which challenge is to promote the humanization of the Health Care.