Promoting Cycling Skills and Participation with Two-Wheel Bike Riding for Children with Neurodevelopmental Disorders.

AIMS: Evaluate changes in two-wheel cycling skills and biking participation goals for children with neurodevelopmental disorders (ND) receiving a home visit and email following iCan Bike camp. METHODS: Participants: 11 children with ND, 9-16 years, and one of their parents. A cycling skills checklist, two-wheel riding Goal Attainment Scaling (GAS), and biking participation GAS were completed before camp (T1), at support visit after camp (T2), and three months following camp (T3). Parents completed biking practice logs. Participants received a support visit to provide instruction, coaching, and address questions, and an email to check progress. RESULTS: Significant changes were made in two-wheel riding GAS T1 to T2 (p = 0.01), biking participation GAS T2 to T3 (p = 0.02), and cycling skills T1 to T2 (p = 0.01) and T2 to T3 (p = 0.02). Practice frequency was related to cycling skills (0.72, p = 0.01) and biking participation (0.86, p < 0.001); cycling skills were related to biking participation (0.81, p = 0.003). CONCLUSION: Children improved cycling skills and biking participation following camp, support visit, and email check-in. Children who practiced more had greater cycling skills and biking participation. Encouraging weekly bicycling and providing support may promote cycling skills and participation following camp.

The wide world of technological telerehabilitation for pediatric neurologic and neurodevelopmental disorders - a systematic review.

Introduction: The use of Information and Communication Technology (ICT) for assessing and treating cognitive and motor disorders is promoting home-based telerehabilitation. This approach involves ongoing monitoring within a motivating context to help patients generalize their skills. It can also reduce healthcare costs and geographic barriers by minimizing hospitalization. This systematic review focuses on investigating key aspects of telerehabilitation protocols for children with neurodevelopmental or neurological disorders, including technology used, outcomes, caregiver involvement, and dosage, to guide clinical practice and future research. Method: This systematic review adhered to PRISMA guidelines and was registered in PROSPERO. The PICO framework was followed to define the search strategy for technology-based telerehabilitation interventions targeting the pediatric population (aged 0-18) with neurological or neurodevelopmental disorders. The search encompassed Medline/PubMed, EMBASE, and Web of Science databases. Independent reviewers were responsible for selecting relevant papers and extracting data, while data harmonization and analysis were conducted centrally. Results: A heterogeneous and evolving situation emerged from our data. Our findings reported that most of the technologies adopted for telerehabilitation are commercial devices; however, research prototypes and clinical software were also employed with a high potential for personalization and treatment efficacy. The efficacy of these protocols on health or health-related domains was also explored by categorizing the outcome measures according to the International Classification of Functioning, Disability, and Health (ICF). Most studies targeted motor and neuropsychological functions, while only a minority of papers explored language or multi-domain protocols. Finally, although caregivers were rarely the direct target of intervention, their role was diffusely highlighted as a critical element of the home-based rehabilitation setting. Discussion: This systematic review offers insights into the integration of technological devices into telerehabilitation programs for pediatric neurologic and neurodevelopmental disorders. It highlights factors contributing to the effectiveness of these interventions and suggests the need for further development, particularly in creating dynamic and multi-domain rehabilitation protocols. Additionally, it emphasizes the importance of promoting home-based and family-centered care, which could involve caregivers more actively in the treatment, potentially leading to improved clinical outcomes for children with neurological or neurodevelopmental conditions. Systematic review registration: PROSPERO (CRD42020210663).

Impacto de la pandemia: acceso a la salud y la educación de los pacientes atendidos en 2019 y 2020 en Policlínica de Neurodesarrollo del Servicio de Neuropediatría del CHPR / Impact of the pandemic on the health and education of patients who received assistance at the Pereira Rossell Pediatric Hospital's Neurodevelopment Clinic in 2019 and 2020 / Impacto da pandemia: acesso à saúde e educação para pacientes atendidos durante os anos 2019 e 2020 na Policlínica de Neurodesenvolvimento do Serviço de Neuropediatria do CHPR

La pandemia ha repercutido en los hábitos cotidianos y en la salud de las personas en múltiples formas, afectando el acceso a las consultas médicas, tratamientos especializados y educación. Las poblaciones con mayor vulnerabilidad socioeconómica o de salud, o ambas, parten de un lugar más desfavorecido respecto a otras ante una situación de pandemia. En el marco de la situación sanitaria de emergencia, realizamos un estudio con el fin de conocer el perfil de desarrollo de los niños atendidos en la Policlínica de Neurodesarrollo del Servicio de Neuropediatría del CHPR durante 2020 y comparar el acceso a servicios de salud y educación con el de aquellos atendidos en 2019, por medio de un estudio descriptivo longitudinal. La información fue relevada mediante entrevista telefónica con los referentes y el análisis de los informes de la evaluación del desarrollo realizada. Según los resultados obtenidos se constata un menor acceso a la educación y a la salud en tiempos de pandemia y repercusiones variadas en la vida cotidiana de los niños con trastornos del neurodesarrollo, manifestando los referentes 60% de impacto negativo, principalmente en el aumento de la irritabilidad y la inquietud. Las restricciones de la pandemia han puesto en primer plano las consecuencias de problemáticas que existían previamente, como ser el costoso acceso a tratamientos especializados y dificultades en el acceso a la educación de calidad adaptada al perfil de desarrollo de cada niño. Esperamos, con el presente trabajo, aportar en mejorar las condiciones ambientales y el acceso a oportunidades de los niños pequeños con patologías del desarrollo.

The pandemic has impacted people's daily habits and health in multiple ways, affecting access to medical consultations, specialized treatments, and education. Populations with greater socioeconomic and/or health vulnerability start from a more disadvantaged level in a pandemic situation. Within the framework of the emergency health situation, we carried out a longitudinal descriptive study in order to know the development profile of the children assisted at the CHPR Clinic in 2020 and compared their access to health and education services to those assisted in 2019. The data was collected through a telephone interview with the referents and the data analyses were obtained from the development assessment reports carried out. The results showed that there is less access to education and health in pandemic times and there are various impacts on the daily life of children with neurodevelopmental disorders. Referents showed a 60% negative impact, mainly in the increase in irritability and restlessness. The pandemic restrictions brought on the consequences of previously existing problems, such as expensive access to specialized treatments and difficulty to access quality education adapted to the development profile of individual children. This paper intends to contribute to the improvement of the environmental conditions and access to opportunities of young children with developmental pathologies.

A pandemia teve impacto nos hábitos diários e na saúde das pessoas de múltiplas formas, afetando o acesso a consultas médicas, tratamentos especializados e educação. As populações com maior vulnerabilidade socioeconómica e/ou sanitária partem dum nível mais desfavorecido quando confrontados com a situação pandêmica. No âmbito da situação de emergência sanitária, realizamos um estudo descritivo longitudinal com o objetivo de conhecer o perfil de desenvolvimento das crianças atendidas na referida Policlínica durante o ano de 2020 e comparar o acesso aos serviços de saúde e educação com o das crianças atendidas no ano de 2019. As informações foram coletadas através de entrevistas telefônicas com os referentes e da análise dos relatórios da avaliação de desenvolvimento realizada. De acordo com os resultados obtidos, há menor acesso à educação e à saúde em tempos de pandemia e existem repercussões variadas no quotidiano das crianças com perturbações do neurodesenvolvimento. Os referentes reportaram um impacto negativo de 60%, principalmente no aumento da irritabilidade e da inquietação. As restrições da pandemia trouxeram as consequências de problemas anteriormente existentes, como o acesso dispendioso a tratamentos especializados e as dificuldades de acesso a uma educação de qualidade e adaptada ao perfil de desenvolvimento de cada criança. Esperamos com este trabalho contribuir para a melhoria das condições ambientais e do acesso a oportunidades para crianças pequenas com patologias de desenvolvimento.

Validación de la PDMS-2 en población española. Evaluación de la intervención de fisioterapia y la participación de los padres en el tratamiento de niños con trastornos del neurodesarrollo / Validation of the PDMS-2 scale in the Spanish population. Evaluation of physiotherapy intervention and parental involvement in the treatment of children with neurodevelopmental disorders

Objetivo: Adaptar transculturalmente la escala del desarrollo motor de Peabody, segunda edición (PDMS-2), del español mexicano al español de España y evaluar su validez. Determinar la eficacia del tratamiento fisioterápico (número de sesiones de fisioterapia y actividades propuestas por el fisioterape uta y realizadas por los padres) en niños con trastornos del neurodesarrollo de 0 a 3 años.Sujetos y métodos: Un primer estudio descriptivo prospectivo de validación de la PDMS-2, que incluyó a 74 sujetos con trastorno del neurodesarrollo con edades comprendidas entre 0 y 3 años. Un segundo ensayo clínico aleatorio para evaluar la intervención de fisioterapia (concepto Bobath) en el grupo experimental (n = 37), que recibió sesiones únicas de 30 minutos semanales durante ocho semanas frente al grupo de control (n = 37), que no recibió fisioterapia y utilizó la PDMS-2 para su evaluación. Resultados: Se encontró una adecuada confiabilidad interagente (coeficiente de correlación intraclase = 0,76). La escala mostró también una muy buena consistencia interna (alfa = 0,99). Hubo diferencias significativas entre ambos grupos a las ocho semanas. El grupo experimental obtuvo mejores puntuaciones en el postest después de administrar el tratamiento de fisioterapia (p < 0,001). Se encontraron coeficientes de correlación moderados y significativos entre el número de sesiones de fisioterapia y el cociente motor total (r = 0,38; p < 0,05) y las actividades realizadas en casa con el cociente motor total (r = 0,46; p = 0,005). Conclusiones: La PDMS-2 es un instrumento válido y fiable para medir el desarrollo motor grueso y fino en niños con trastorno del neurodesarrollo de 0 a 3 años. La fisioterapia es útil en la mejoría en niños con retraso del neurodesarrollo...(AU)

Aim: Cross-culturally adapt the PDMS-2 scale from Spanish-Mexican to Spanish-Spanish and evaluate its validity. To determine the efficacy of physiotherapy treatment (number of physiotherapy sessions and activities proposed by the physiotherapist and performed by the parents) in children with neurodevelopmental disorders between the ages of 0 and 3 years. Subjects and methods: A first prospective descriptive study of validation of the PDMS-2 scale including 74 subjects with neurodevelopmental disorder with aged from 0 and 3 years old. A second randomized clinical trial to evaluate the physiotherapy (Bobath concept) intervention in the experimental group (EG) (n = 37) who received unique 30-minute weekly sessions for 8 weeks against the control group (CG) (n = 37) that did not receive physiotherapy using the PDMS-2 scale for evaluation. Results: An adequate inter-rater reliablity was found (ICC = 0.76). The scale showed also a very good internal consistency (alpha = 0,99). Significant differences between both groups at 8 weeks. EG obtained better scores in the postest after administrating the physiotherapy treatment (p < 0.001) Moderate and significant correlation coefficients were found between the number of physiotherapy sessions and Total Motor Quotient (TMQ) (r = 0.38; p < 0.05) and the home actitvities with TMQ (r = 0.46; p = 0.005). Conclusions: The Peabody PDMS-2 scale is a valid and reliable instrument to measure gross and fine motor development in children with neurodevelopmental disorder aged from 0 and 3 years old. Physiotherapy is useful for helping children with delayed neurodevelopment improve. The number of physiotherapy sessions and the activities proposed by the physiotherapist and performed at home by the parents show a direct and positive relationship with the results obtained in motor development.(AU)

Los hitos del desarrollo del bebé prematuro: una mirada desde las co-ocupaciones / The developmental milestones of the premature baby: a look from co-occupations

OBJETIVOS: estudiar las características del prematuro, la participación de los padres, y la interacción con las co-cupaciones. MÉTODOS: realizamos un estudio cuantitativo, transversal descriptivo de 197 bebés entre 0 y 24 meses de edad corregida en un hospital de tercer nivel, en la ciudad de Cali Colombia. En el grupo interprofesional de CANGUROS se evaluaron los componentes reflejos, tónicos y sensoriales; habilidades motoras, adaptativas e integración social, y factores de desarrollo. Además, se analizó la interacción con las ocupaciones. En el proceso se integró a la familia en un plan de mejoramiento. RESULTADOS: la población mostró notorias dificultades en las habilidades motoras. Manifestaron menor dificultad en las habilidades manipulativas, adaptativas, las respuestas a los estímulos sensoriales y reacciones reflejas. Por último, las dificultades en la interacción social y la alimentación fueron mínimas. CONCLUSIÓN: la pronta actuación e intervención de un equipo interprofesional permitió la identificación temprana de riesgos de desarrollo. Esta temprana identificación e intervención de riesgo y los familiares implicados en la recuperación crearon hábitos y rutinas

OBJECTIVE: To study the characteristics of the premature infant, the participation of parents, and the interaction with co-sharing. METHODS: It is a quantitative, descriptive cross-sectional study of 197 babies between 0 and 24 months of corrected age in a tertiary hospital, in the city of Cali, Colombia. In the interprofessional group of KANGAROOs, reflex, tonic and sensory components were evaluated; motor skills, adaptive and social integration, and developmental factors. In addition, the interaction with occupations was analyzed. In the process, the family was integrated into an improvement plan. RESULTS: Notorious difficulties were found in motor skills. On the other hand, less difficulty was found in manipulative and adaptive skills, responses to sensory stimuli and reflex reactions. Finally, very few difficulties were found in social interaction and feeding. CONCLUSION: The prompt action and intervention of an interprofessional team allows the early identification of development risks. This early identification facilitates intervention and empowers the family in co-occupations in order to create habits and routines

Linguagem, neurodesenvolvimento e comportamento na Síndrome de Angelman: relato de caso / Language, neurodevelopment, and behavior in Angelman syndrome: a case report

RESUMO Objetivo O objetivo deste estudo é apresentar achados de linguagem, comportamento e neurodesenvolvimento de uma menina com diagnóstico da Síndrome de Angelman, avaliada aos três e aos oito anos. Método Os instrumentos de avaliação foram Observação do Comportamento Comunicativo, Early Language Milestone Scale (ELM) e Teste de Screening de Desenvolvimento DENVER-II (TSDD-II). Resultados No caso apresentado, verifica-se a presença dos sinais fenotípicos da SA, tais como boca larga, dentes espaçados, língua protuberante, estrabismo, fissuras palpebrais ascendentes e sialorreia. Na avaliação de linguagem, foram verificados déficits expressivos e receptivos, com ausência de oralidade e prejuízos na compreensão. O TSDD-II e a ELMS indicaram grave comprometimento de todas as habilidades avaliadas aos três e aos oito anos. O desempenho encontrado, nas duas avaliações, foi muito semelhante em todas as áreas do desenvolvimento infantil. Ao longo dos anos, verificou-se pouca evolução, apesar do grande investimento terapêutico e educacional. Conclusão A presença de um quadro complexo como a SA demanda necessidades clínicas de alta complexidade, situação agravada frente à escassez de recursos terapêuticos que possam minimizar os impactos deletérios da síndrome, culminando em comprometimento da qualidade de vida da população com a SA, bem como de suas famílias.

ABSTRACT Purpose This study aimed to present findings on language, behavior, and neurodevelopment in a girl diagnosed with Angelman Syndrome, evaluated when she was three and eight years old. Methods The following evaluation instruments were used: Observation of Communication Behavior, Early Language Milestone (ELM) Scale, and Denver Developmental Screening Test, 2nd edition (DDST-II). Results In this case report, presence of AS phenotype signals such as wide mouth and wide-spaced teeth, tongue thrusting, strabismus, up slanting palpebral fissures, and sialorrhea are verified. Expressive and receptive deficits were verified in the language assessment, with the absence of orality and loss of comprehension with very similar performances in both evaluations. The ELM and DDST-II tests indicated severe impairment of all abilities evaluated at both three and eight years of age. Performance was quite similar in both evaluations in all areas of child development. Little progress was observed over time despite the great therapeutic and educational investment. Conclusion The presence of a complex scenario such as AS demands high complexity clinical needs, a situation that is worsened due to scarcity of therapeutic resources that could minimize the harmful impacts of AS and culminate in increased quality of life for the AS population and their families.

Caracterización de las familias que abandonan el tratamiento de estimulación temprana. Centro Senén Casas Regueiro / Characterization of the families that abandon the early stimulation treatment. Senén Casas Regueiro Center

Introducción: se desconoce por qué las familias y consecuentemente el infante interrumpe o abandona el tratamiento establecido por el Programa de Atención Temprana para los trastornos del neurodesarrollo. Objetivo: Describir las características de las familias que abandonan el tratamiento de estimulación temprana en el centro Senén Casa Regueiro. Material y Métodos: estudio descriptivo, transversal en familias de infantes de 0 a 12 años con trastornos del neurodesarrollo en La Habana Vieja durante el periodo 2014-2015, que considera variables demográficas, sociales y económicas. En el análisis se emplearon las frecuencias absolutas y relativas, la media, la desviación estándar y las pruebas x2. Resultados: la prevalencia de abandono del tratamiento fue del 88,0 por ciento. Los porcentajes de mayor interrupción se presentaron en madres o tutores de 15-18 años (47,20 por ciento, x2 = 10,47 p = 0.0001) y en hijos de padres divorciados (52,00 por ciento). El nivel de escolaridad que mayor porcentaje aportó al problema fue el primario (52,00 por ciento, x2 = 20, 69 p= 0,0000), en familias con mayor número de hijos; de 3-4 hijos (86,40 por ciento, x2 = 29,90 p = 0,00000), que poseían viviendas en malas condiciones (48,00 por ciento x2 = 9,45 p = 0,00021). Los tratamientos más prolongados expresaron mayor porcentaje de abandono (60,00 por ciento, x2 = 3,75 p = 0,053519). Tanto las familias que desertaron del tratamiento, como las que no, presentaron elevados porcentajes de buena satisfacción con el programa (95,20 por ciento y 94,12 por ciento respectivamente). Conclusiones: predominó el abandono al tratamiento en madres cuyos grupos de edades oscilaron entre 15-18 años, divorciadas, en niños con tratamientos más prolongados; destacándose el nivel de escolaridad primario de las madres y las malas condiciones de la vivienda. Asimismo, interrumpieron el tratamiento las familias con mayor número de hijos y menor número de personas con remuneración monetaria(AU)

Introduction: It is unknown why families and consequently, the infant interrupt or abandon the treatment established by the Early Care Program for neurodevelopmental disorders. Objective: To describe the characteristics of families that abandon the early stimulation treatment at the "Senén Casas Regueiro" Center of Comprehensive Pediatric Rehabilitation. Material and Methods: A descriptive, cross-sectional study was conducted in families of infants with neurodevelopmental disorders from 0 to 12 years old in Old Havana, during the period 2014-2015. Demographic, social, and economic variables were considered. Absolute and relative frequencies, the mean, the standard deviation, and the chi-squared tests were used in the analysis. Results: The prevalence of abandonment of treatment was 88.0 percent. The percentages of greatest interruption occurred in mothers or guardians aged 15-18 years (47.20 percent; x2= 10.47; p = 0.0001), and in children of divorced parents (52.00 percent). The level of education that contributed in the highest percentage to the problem was primary schooling (52.00 percent; x2 = 20, 69; p = 0.0000) in families with the largest number of children; families with 3-4 children (86.40 percent; X2 = 29.90; p = 0.00000), who lived in homes in poor conditions (48.00 percent x2 = 9.45; p = 0.00021). Longer treatments expressed a greater percentage of abandonment (60.00 percent; x2 = 3.75; p = 0.053519). Both the families that abandoned the treatment and those that did not do it, showed high percentages of good satisfaction with the program (95.20 percent and 94.12 percent, respectively). Conclusions: Abandonment of treatment predominated in mothers whose age groups ranged between 15-18 years; divorced; in children with more prolonged treatments; highlighting the mothers with primary schooling and poor housing conditions. Likewise, families with a greater number of children and a smaller number of people with monetary remuneration interrupted the treatment(AU)

Abordajes psicoterapéuticos de los casos difíciles ( y II) / Psychotherapeutic approaches in difficult cases

Resumen: en este artículo planteamos el problema de la psicoterapia en los casos difíciles entendiendo como tales lo contrario de los casos de indicaciones de consulta terapéuticas o de psicoterapias breves (padres-hijos o de tipo ``focal``). Se dan ejemplos clínicos para ilustrar la hipótesis de que las intervenciones psicoterapéuticas breves pueden realizarse sobre todo en las organizaciones de personalidad de tipo neurótico o ``para-depresivo``. En las organizaciones borderline más o menos regresivas las posibilidades de construir un ``foco psicoterapéutico central`` se reducen y con ello la posibilidad de realizar una acción psicoterapéuticas negativas o simbióticos, incluso la psicoterapia convencional encuentra grandes obstáculos, en partículas reacciones terapéuticas negativas (AU)

In this paper we pose the problem of psychotherapy in difficult cases in contrast with illustrate the hypothesis that brief psychotherapeutic (parents-child or ``focal`` ). Several clinical example which illustrate the hypothesis that brief psychotherapeutic interventions are attainable, above all, in neurotic or`` para-depresive`` personality organizations are given. In more or less regressive borderline organizations the possibilities of constructing a `` central psychotherapeutic focus`` and therefore of obtaining a brief psychotherapeutic action are reduced, though this may be attempted. In more regressive personality organizations, with infant psychotic autistic or symbiotic traits, even conventional psychotherapeutic interventions, neurotic personality, psychosis (AU)