Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

Abstract Objectives To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children. Methods It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used. Results Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37). Conclusions The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Representaciones sociales de la parálisis cerebral en madres de niños que asisten a un centro de neurorrehabilitación en Cali-Colombia / Social representations of cerebral palsy in mothers of children who attend a neurological rehabilitation center in Cali-Colombia / Representações sociais da paralisia cerebral em mães de crianças que frequentam um centro de reabilitação neurológica em Cali-Colômbia

Resumen Objetivo: en Colombia, existe una brecha importante entre la reglamentación relacionada con el reconocimiento de derechos, inclusión y mecanismos para la protección de los niños con discapacidad y la implementación de la norma. En este contexto, el objetivo de este estudio fue explorar las representaciones sociales de la parálisis cerebral en madres de niños con parálisis cerebral. Metodología: se realizó un estudio cualitativo bajo el enfoque estructuralista de las representaciones sociales para caracterizar el contenido y la organización de las representaciones sociales de la parálisis cerebral de madres de niños con parálisis cerebral que consultaron a un centro de neurorrehabilitación en Cali, Colombia entre enero y febrero de 2022. Como técnicas de recolección se utilizaron el listado libre y el cuestionario de pares. Resultados: para las madres la parálisis cerebral es la alteración de movimiento que junto con la dificultad de aprendizaje y comunicación generan gran demanda de atención por parte del cuidador acompañado de sentimientos de resignación ante las secuelas de la lesión en el cerebro y la discriminación social percibida. Conclusiones: las representaciones sociales sobre la parálisis cerebral dejan percibir una visión negativa y poco esperanzadora de recuperación, así como resiliencia por parte de los cuidadores.

Abstract Objective: In Colombia, there is a significant gap between the regulations related to the recognition of rights, inclusion, and mechanisms for the protection of children with disabilities and the implementation of the law. In this context, the aim of this study was to explore the social representations of cerebral palsy in mothers of children with cerebral palsy. Methodology: We collected information from mothers with children with cerebral palsy who consulted a neurorrehabilitation center in Cali, Colombia between January and February 2022 using the free list and the peer questionnaire. Results: For mothers, cerebral palsy is a movement disorder that, together with learning and communication difficulties, generates a great demand for care by the caregiver, accompanied by feelings of resignation in the face of the consequences of the brain injury and perceived social discrimination. Conclusions: The social representations on cerebral palsy reveal a negative and hopeless view of recovery, as well as resilience on the part of caregivers.

Resumo Objetivo: Na Colômbia, existe uma brecha importante entre a regulamentação relacionada ao reconhecimento de direitos, inclusão e mecanismos para a proteção dos meninos com deficiência e a implementação da norma. Neste contexto, o objetivo deste estúdio pode explorar as representações sociais da paralisia cerebral em mães de crianças com paralisia cerebral. Metodologia: Recolha a informação das madres com crianças com paralisia cerebral que consulte um centro de neurorreabilitação em Cali, Colômbia entre enero e febrero de 2022 usando o listado livre e o guia de pares. Resultados: Para as mães a paralisia cerebral é a alteração de movimento que se junta com a dificuldade de aprendizagem e comunicação gera grande demanda de atenção por parte do cuidador acompanhado de sentimentos de resignação antes das seqüelas da lesão no cérebro e na discriminação percepção social. Conclusões: Las representaciones sociales sobre la paralisis cerebral dejan ver una visão negativa y poco esperanzadora de recuperação, así como resiliência de parte de los cuidadores.

Neurodevelopmental disorder associated with NARS1 gene mutation in a child with cerebral palsy

Cerebral palsy is the most common cause of chronic motor disability in children. CP has a multitude of causes, including developmental, genetic, metabolic, ischemic, infectious, and acquired, all of which result in comparable neurologic symptoms. As of right now, the cause of CP remains unclear. Research has found a substantial link between low birth weight, birth hypoxia, and poor fetal position and placenta. When diagnosing children with cerebral palsy and determining its cause, brain imaging is crucial. The final diagnosis should consider many factors, including physiological, topographic, ICF/functional, and neuroradiological categorization, origin, time of injury, concomitant disorders, sequelae, and nutritional status. This assists with planning, management, counseling, progress tracking, and prognosis. We present a case of a 5-year-old child with cerebral palsy who has a complicated clinical presentation including delayed psychomotor development, dysmorphia, and a verified pathogenic variation in the NARS1 gene linked to a neurodevelopmental condition. The child has been receiving frequent monitoring and multimodal therapies, such as physical therapy, defectologist sessions, and omega fatty acid supplements. Genetic testing found a pathogenic variant in the NARS1 gene, emphasizing the significance of genetic screening for parents to prevent recurrence in future pregnancies. Collaboration with special education instructors and speech therapists remains active to meet the child's communicative and cognitive requirements.

A study on risk factors, clinical profile, spectrum of comorbidities in children with cerebral palsy and efficacy of early intervention by rehabilitation units on neurodevelopmental outcome in these children

Background: Cerebral palsy (CP) is one of the leading causes of childhood disability worldwide with the greatest burden found in developing countries. This study is undertaken as there is limited data available regarding CP children in the Andhra Pradesh region. This study was done to evaluate the clinical spectrum, risk factors, and comorbidities associated with CP that will help in better understanding of etiology and for early intervention by District early intervention centers.Methods: This is a hospital-based prospective observational study conducted over 18 months among children from 6 months to 5 years of age visiting a tertiary care hospital.Results: Among 65 enrolled children majority of the children (74%) were between 2 to 5yrs with a male-to-female ratio of 4:1. Consanguinity was observed in 33.8% and the majority were from rural areas (71%). The most frequent presenting complaint was delayed milestones (33.4%). 67.6% of subjects were born at term with the most common risk factor being birth asphyxia (27.6%). The most common type was spastic CP (87%) in whom the Developmental quotient (DQ) was severely affected (56.7%) and 32.3% of children belong to GMFCS level III. Comorbidities like feeding difficulties and GERD (47.6%), visual problems (24.8%), and hearing problems (30%) were commonly associated. At the time of enrollment, only 21.5% of children had normal nutritional status which improved to 30.7% after 12 months of follow-up.Conclusions: Efforts should be made to increase awareness among parents regarding the availability of encouraging utilization of the services to relieve the burden of disorder.

Significado de cuidar niños con parálisis cerebral / Meanings of caring for children with cerebral palsy / Significado de cuidar crianças com paralisia cerebral

Resumen (analítico) Existe insuficiente evidencia acerca de lo que significa ser cuidador de niños o niñas con parálisis cerebral en Colombia. Nuestra investigación se aborda desde un enfoque hermenéutico, utilizando el método de la teoría fundamentada, con 13 entrevistas semiestructuradas a adultos cuidadores de niños y niñas con parálisis cerebral. Emergen cuatro categorías: amor incondicional, cuidando como mujer, atravesando el duelo e interminable lucha por los derechos del menor. Se concluye que existe una decidida forma de afrontamiento de las cuidadoras, pues están dispuestas a renunciar a sus propias vidas, a sus relaciones personales y sociales, a sufrir un constante duelo, a aprender nuevas formas de cuidar y transformar sus hogares, hasta luchar por la atención digna de sus hijos. El amor sin condiciones les permite reconocerse como mujeres cuidadoras únicas.

Abstract (analytical) There is insufficient evidence regarding meanings developed by caregivers of children with Cerebral Palsy in Colombia. The methodology involved adopting a hermeneutic approach, which was combined with the grounded theory method. A total of 13 semi-structured interviews were conducted with adult caregivers of children with cerebral palsy. Following an analysis of the results, four categories emerged: unconditional love; caring as a woman; experiencing grief; and the endless fight for their child's rights. It was concluded that the caregivers of children with Cerebral Palsy have developed determined coping skills. This is because they are willing to give up their own lives, sacrifice their personal and social relationships, experience constant grief and learn new ways of caring and transforming their homes in their struggle to provide dignified care for their children. Unconditional love allows these caregivers to recognize themselves as unique caring women.

Resumo (analítico) Não há evidências suficientes sobre o que significa ser cuidador de crianças com paralisia cerebral na Colômbia. Pesquisa abordada a partir de uma abordagem hermenêutica, utilizando como método da teoria fundamentada, com 13 entrevistas semiestruturadas com adultos cuidadores de crianças com paralisia cerebral. Emergem quatro categorias: amor incondicional, cuidado como mulher, vivência do luto e luta incessante pelos direitos da criança. Conclui-se que existe uma determinada forma de enfrentamento para os cuidadores, pois estão dispostos a abdicar de sua própria vida, de suas relações pessoais e sociais, a sofrer lutos constantes, a aprender novas formas de cuidar e transformar seus lares, a lutar por cuidado digno de seus filhos. O amor incondicional permite que elas se reconheçam como mulheres únicas e carinhosas.

Tratamiento de la contractura en flexión de rodilla en parálisis cerebral / Treatment for knee flexion contracture in cerebral palsy

La extensión completa de la rodilla es esencial para la marcha. Los pacientes con parálisis cerebral infantil con frecuencia pueden tener déficit de extensión de distinta magnitud, lo que compromete la marcha e incluso la bipedestación. El tratamiento de la contractura en flexión de rodilla parte por tratar la espasticidad de los músculos comprometidos y con fisioterapia. Cuando el flexo es estructurado, el tratamiento es quirúrgico mediante distintas técnicas, dependiendo de la magnitud de la contractura y de la edad del paciente. Las técnicas sobre partes blandas incluyen alargamientos funcionales de isquiotibiales y transferencias musculares. Cuando la contractura es capsular, es preferible realizar cirugía ósea, la cual extiende el fémur proximal, ya sea en forma progresiva, mediante fisiodesis anterior en pacientes pediátricos, o en forma aguda, mediante osteotomía extensora del fémur distal. Con frecuencia existe una patela alta, la cual hay que corregir en el mismo acto quirúrgico para mantener la eficiencia del aparato extensor

Full knee extension is essential for gait. Patients with cerebral palsy frequently have extension deficits of different magnitudes, which compromise walking and even standing up. The treatment of knee flexion contracture begins by addressing the spasticity of the involved muscles and includes physical therapy. For structured extension deficits, the treatment is surgical, using different techniques depending on the magnitude of the contracture and the patient's age. Soft tissue techniques include functional hamstring lengthening and muscle transfers. For capsular contracture, bone surgery is preferable and extends the proximal femur either progressively, through anterior physiodesis in pediatric patients, or acutely, by extensor distal femoral osteotomy. A high patella is common and requires correction during the same surgical procedure to maintain the efficiency of the extensor apparatus

Clinical characteristics and associated factors of cerebral palsy in pediatric population: a tertiary care centre clinicoepidemiological study

Background: Although, a highly prevalent disease, the etiology of cerebral palsy is still poorly understood thereby eluding a definitive prevention strategy. Our study aimed to evaluate the etiological, clinical and prognostic factors associated with cerebral palsy in children of western Rajasthan. Methods: All cases of non-progressive neurological disorder in the age group of 6 months to 14 years were enrolled in the present study. Detailed assessment, CNS examination and related neuroimaging were performed. Statistical analysis was done by standard statistical methods. Results: Maximum number of patients in current study were in the age group of 1-3 years. In our study according to sex, 40 (66.67%) were males and 20 (33.33) were females. Most of the patient in the present study were spastic quadriplegic type (40%) followed by spastic diplegia in 20% cases. As per gross motor function classification system (GMFCS) grading, maximum number of cases were 16 (26.67%) from grade 4. The most common sequelae in cerebral palsy were speech delay in 49 (81.66%) patients. Cortical atrophy was the most commonly (71.73%) seen abnormality on neuroimaging with CT-scan. Conclusions: Cerebral palsy is a non-progressive CNS disorder which has a major physical as well as psychological effects on the children as well as their families. The present study highlights the importance of understanding epidemiological and etiological aspects of the disease in Indian scenario.

Efectividad de la Terapia Acuática en la Función Motora Gruesa en Población Infantojuvenil con Parálisis Cerebral. Una Revisión Narrativa / Effectiveness of Aquatic Therapy on Gross Motor Function in Children and Young People with Cerebral Palsy. A Narrative Review

Introducción. La parálisis cerebral (PC) es una de las principales causas de discapacidad en la población infantil, afectando diversas áreas del desarrollo como la función motora gruesa; equilibrio y marcha. Hay evidencia de los beneficios de la terapia acuática y de cómo puede complementar la rehabilitación. Objetivo. Describir la efectividad de las intervenciones acuáticas en personas con PC, determinar mejoras en la función motora gruesa uso de métodos, protocolos y dosificación. Métodos. Se analizaron 9 estudios aleatorizados controlados desde el 2012 a la fecha, seleccionados por un experto y cuyos sujetos tenían PC espástica, Gross Motor Function Classification System (GMFCS) I a IV, entre los 2 y 20 años. Post intervención acuática se reportan mejoras significativas en el promedio de los ítems medidos por Gross motor function measure (GMFM). De los métodos que contribuyeron a mejoras se encuentra Halliwick y ejercicios acuáticos sin un programa específico. Resultados. Se obtuvieron mejoras de 35 a 100 minutos, y de 12 a 30 sesiones en total. No se logra concluir el tipo de terapia más efectiva, ya que las medidas de resultado y las características de los sujetos eran diversas. Conclusión. Una dosificación mínima de 2 veces por semana, 35 minutos de intervención en un total de 16 sesiones (9,3 horas en total) pareciera mejorar la función motora gruesa, cuyos resultados son transferibles a las actividades en tierra inmediatamente, sin embargo, no se obtiene información si se mantienen a mediano o largo plazo.

Background. Cerebral palsy (CP) is one of the main causes of disability in the child population, affecting various areas of development such as gross motor function; balance and gait. There is evidence of the benefits of aquatic therapy and how it can complement rehabilitation. Objective. to describe the effectiveness of aquatic interventions in people with CP, to determine improvements in gross motor function using methods, protocols, and dosage. Methods. Nine randomized controlled studies were analyzed from 2012 to date, selected by an expert and whose subjects had spastic CP, Gross Motor Function Classification System (GMFCS) I to IV, between 2 and 20 years of age. Results. After the aquatic intervention, significant improvements were reported in the average of the Gross motor function measure (GMFM) items measured. Of the methods that contributed to improvements, there is Halliwick and aquatic exercises without a specific program. Results. Improvements were obtained from 35 to 100 minutes, and from 12 to 30 sessions in total. It is not possible to conclude the most effective type of therapy, since the outcome measures and the characteristics of the subjects were diverse. Conclusion. A minimum dosage of 2 times per week, 35 minutes of intervention in a total of 16 sessions (9.3 hours in total) seems to improve gross motor function, the results of which are immediately transferable to activities on land, however, it is not obtains information if they are maintained in the medium or long term.

Evaluación y tratamiento kinésico motor de una niña con diagnóstico de parálisis cerebral luego de una rizotomía dorsal selectiva: reporte de un caso / Physical therapy evaluation and treatment of a girl diagnosed with cerebral palsy after selective dorsal rhizotomy: a case report

RESUMEN Introducción: La parálisis cerebral (PC) es la causa más frecuente de espasticidad en la infancia. Una alternativa de tratamiento es la rizotomía dorsal selectiva (RDS). La selección de los candidatos para esta cirugía requiere una evaluación exhaustiva, y la rehabilitación es fundamental para lograr los mejores resultados. El objetivo de este estudio es describir la evaluación y el tratamiento kinésico motor de una niña con PC que fue sometida a una RDS. Presentación del caso: Una niña de siete años con PC fue sometida a una RDS como parte del manejo de la espasticidad en los miembros inferiores. Se describió la evaluación antes de la RDS y seis meses después de esta. Se registraron el grado de espasticidad, el rango articular, las pruebas de longitud muscular, la alineación ósea, la fuerza, el desempeño funcional y la marcha. El tratamiento consistió en una etapa de internación postquirúrgica y una etapa ambulatoria. Conclusión: Se describieron la evaluación y el tratamiento kinésico motor de una niña con PC sometida a una RDS. Observamos disminución de la espasticidad, ausencia de actividad refleja patológica, mejor control motor selectivo, aumento del rango articular, mayor fuerza distal y mejora en el puntaje en la escala de videoanálisis de la marcha y en la escala de movilidad funcional. La niña logró la bipedestación al quinto día postquirúrgico y aumentó las distancias recorridas.

ABSTRACT Introduction: Cerebral palsy (CP) is the most common cause of spasticity in childhood. An alternative treatment is selective dorsal rhizotomy (SDR). The selection of candidates for this surgery requires a thorough evaluation, and rehabilitation is essential to achieve the best results. The aim of this study is to describe the physical therapy evaluation and treatment of a girl with CP who underwent RDS. Case presentation: A seven-year-old girl with CP underwent RDS as part of the management of spasticity in her lower limbs. The patient was evaluated before RDS and at six months. The degree of spasticity, range of motion, muscle length tests, bone alignment, strength, functional performance, and gait were recorded. The treatment included a post-surgical inpatient stage and an outpatient stage. Conclusion: The physical therapy evaluation and treatment of a girl with CP who underwent RDS were described. We observed decrease in spasticity, absence of pathological reflex activity, improvement in selective motor control, increase in range of motion, greater distal strength, and improvement in the score on the video-based gait analysis scale and functional mobility scale. The girl achieved standing on the fifth post-surgical day and showed an increase in distances covered.

Study of cognitive functional changes in children with spastic cerebral palsy using diffusion tensor imaging based graph theory analysis / 中华放射学杂志

Objective:To explore brain network properties and their relationship with cognitive function in children with spastic cerebral palsy (SCP) using diffusion tensor imaging (DTI) based graph theory analysis.Methods:The study was a cross-sectional study. Clinical and imaging data of 21 children with SCP (SCP group) and 32 healthy children (control group) who underwent cranial MRI at the Affiliated Hospital of Zunyi Medical University from August 2020 to April 2022 were analyzed retrospectively. 3D-T 1WI, DTI and Wechsler Intelligence Scale were assessed for all subjects. The Wechsler Intelligence Scale included the verbal comprehension index (VCI), the processing speed index (PSI), the work memory index (WMI), and the perceptual reasoning index (PRI), etc., and ultimately the full scale intelligence quotient (FSIQ) scores were obtained based on the indices of each subscale. Independent samples t-test was used to analyze the differences in the small world attributes [small-world index (σ), normalized shortest path length (λ), normalized clustering coefficients (γ)], global attributes [global efficiency (Eglob), local efficiency (Eloc), characteristic path length (Lp), clustering efficiency (Cp)] and node attributes [degree centrality(DC), nodal efficiency (Ne), betweeness centrality (Bc), nodal shortest path length (NLp), nodal clustering efficiency, nodal local efficiency] between two groups of children′s brain networks. Brain network indicators with statistically significant differences between the 2 groups were correlated with Wechsler Intelligence Scale scores using Spearman. Results:The FSIQ scores on the Wechsler Intelligence Scale and the VCI, WMI, PSI, and PRI were lower in the SCP group than in the control group, and the differences were all statistically significant (all P<0.05). Both groups of children′s brain networks had small world properties. Compared with the control group, Eglob decreased, Lp and λ increased in the SCP group (all P<0.05). Compared with the control group, DC and Ne in multiple brain regions decreased, NLp increased in the SCP group (all P<0.05, FDR corrected). Correlation analysis showed that DC in the right parsopercularis was positively correlated with FSIQ, VCI, WMI and PRI( r=0.53, 0.47, 0.47, 0.60, P=0.019, 0.045, 0.044, 0.020, respectively); NLp in the right parsopercularis was negatively correlated with PRI( r=-0.56, P=0.030); Ne in left paracentral, the right parsopercularis, right precentral, right postcentra were positively correlated with PRI( r=0.62, 0.56, 0.53, 0.54, P=0.015, 0.031, 0.044, 0.039, respectively); Ne in the right precentral was positively correlated with WMI ( r=0.48, P=0.039) in the SCP group. Conclusions:There are changes in the topological attributes of global and multiple regional brain networks in SCP. The changes in the attributes of nodes in the right parsopercularis, right precentral, right postcentral, and left paracentral could reflect cognitive dysfunction in children with SCP.

Evaluation of the efficacy of proximal femoral varus derotational osteotomy in conjunction with modified triple innominate osteotomy for the management of hip dislocation in cerebral palsy / 中华骨科杂志

Objective:To assess the effectiveness and postoperative stability of proximal femoral varus derotational osteotomy combined with modified triple innominate osteotomy in treating hip dislocation in cerebral palsy.Methods:A total of 28 hips (11 left, 17 right) from 23 patients with cerebral palsy-induced hip dislocation who underwent the said surgical procedures were retrospectively examined between November 2018 and September 2022. The median age at the time of surgery was 7.7 years. Preoperatively, 29% of hips exhibited pain. Intraoperatively, a three-dimensional subtrochanteric osteotomy was performed with internal fixation using a Pediatric Hip Plate, alongside a modified triple innominate osteotomy via the Smith-Petersen and perineal approaches. Clinical assessments included pre- and postoperative evaluations of hip pain and joint mobility, as well as imaging evaluations, including migration percentage, acetabular index, acetabular offset, neck shaft angle, and femoral neck anteversion.Results:With a median follow-up of 15 months (range: 12 months to 20 months), all patients were successfully monitored. The median surgery duration was 6.1 hours, with blood loss averaging 400±153 ml (range 200-800 ml). The difference between the median postoperative (1 week after operative) MP 0% (0%, 0%) and the median preoperative MP 50.5% (38.2%, 75.8%) was statistically significant ( Z=4.624, P<0.001). The difference between the median postoperative AI 1.0° (-3.3°, 11.8°) and the median preoperative AI 29.4° (26.3°, 38.0°) was statistically significant ( Z=4.623, P<0.001). The difference between the median postoperative AO 69.8 (66.0, 76.0) mm and the median preoperative AO 72.3 (69.1, 81.1) mm was statistically significant ( Z=4.099, P<0.001). The difference between the median postoperative NSA 124.3° (118.7°, 129.9°) and the median preoperative NSA 145.6° (139.6°, 153.5°) was statistically significant ( Z=4.541, P<0.001). The difference between the median postoperative FNA 13.0° (5.4°, 24.1°) and the median preoperative FNA 33.6° (27.8°, 39.8°) was statistically significant ( Z=4.407, P<0.001). The pain was relieved postoperatively in 7 hips (88%) and residual hip pain in 1 hip. The postoperative range of motion was preserved. No case of avascular necrosis of the femoral head was observed. There were 2 hips (7%) with nonunion in the iliac arcuate line. No case of redislocation was observed at the last follow-up, and no revision was performed recently. There was no significant difference between the median MP at the last follow-up of 0% (0%, 10.0%) and the median postoperative MP ( Z=0.561, P=0.575). Conclusion:The modified triple innominate osteotomy proved to be an effective intervention for correcting acetabular deformity in cerebral palsy-induced hip dislocation. The combination of proximal femoral varus derotational osteotomy with the modified triple approach not only significantly corrected hip dislocation but also alleviated pain and maintained joint mobility in pediatric patients with cerebral palsy.

Application of rehabilitation nursing model based on early intervention in high-risk infants with cerebral palsy / 中国现代医生

Objective To explore the application value of rehabilitation nursing model based on early intervention in high-risk infants with cerebral palsy.Methods A total of 112 high-risk infants with cerebral palsy were selected from neonatal intensive care unit of Jiaxing Maternity and Child Health Care Hospital from January to December 2022.According to the parents'wishes,they were divided into observation group and control group,56 cases in each group.The control group was adopted routine nursing mode,and the observation group was given rehabilitation nursing mode based on early intervention on the basis of routine nursing.At correction of 1 month and 3 months,general movements quality assessment method was used to evaluate central nervous system development of two groups.Results At correction of 1 month and 3 months,the normal rate of infants in observation group was significantly higher than that in control group(P<0.05).Conclusion The rehabilitation nursing model based on early intervention can promote the neurodevelopment of high-risk infants with cerebral palsy to a certain extent,and can be popularized in early clinical nursing.

Application of virtual reality technology in physical activity and health of children and adolescents with cerebral palsy: a systematic review of systematic reviews / 中国康复理论与实践

ObjectiveTo systematically review the evidence from systematic reviews of the application models and health benefits of virtual reality (VR) technology in physical activities and health domains in children and adolescents with cerebral palsy (CP). MethodsPubMed, Embase, CINAHL, SPORTDiscus, Google Scholar, PsycINFO and CNKI were searched to collect and screen systematic reviews published from January, 2020 to March, 2024 on the application of VR technology in physical activities and health for children with CP. The relevant evidence was reported following PRISMA guidelines. ResultsA total of eight English researches from China, Saudi Arabia, Indonesia and Brazil were included, involving 5 692 children and adolescents with CP, came primarily from interdisciplinary journals in clinical medicine, therapy and clinical risk management, games and gamification, and physical movement therapy. The subjects aged four to 18 years, with spastic hemiplegia and spastic diplegia. The VR technologies featured five typical application models: immersive environment simulation; interactive motion gamification; virtual training and coaching; AI-based activity data tracking and analysis, and motion capture and feedback, biofeedback integration and wearable technology applications; and augmented reality integration. Interventions lasted 15 to 90 minutes a time, one to 15 times a week, with intensities ranging from moderate to vigorous and durations from one to 24 weeks. The application of VR technology might increase the interest in participating in physical activities, enhance the interactive experience, through integration with wearable and biofeedback technologies, enable timely monitoring, tracking, analysis and feedback on children's activity statuses, improving their physical and functional abilities. ConclusionVR technology including immersive environment simulation and interactive motion gamification may improve interest in physical activities, physical quality and functional abilities, promoting behavioral health, and enhancing overall health levels and quality of life of children and adolecents with CP.

Botulinum toxin A for the treatment of strabismus in children with neurological impairment / Toxına botulínica tipo A para o tratamento de estrabısmo em crianças neurologicamente comprometidas

ABSTRACT Purposes: To assess the efficacy of botulinum toxin A injection in the treatment of strabismus in patients with neurological impairment and evaluate the factors associated with treatment success. Methods: The study included 50 patients with strabismus and neurological impairment. In all children, botulinum toxin injection was performed into the appropriate extraocular muscle. The relationship between demographic features, clinical characteristics, and treatment success were analyzed. Results: In the study group, 34 patients had esotropia, and 16 patients had exotropia. As neurological problems, 36 patients had cerebral palsy, and 14 had hydrocephalus. The average follow-up period was 15.3 ± 7.3 months. The mean number of injections was 1.4 ± 0.6. The mean angle of deviation was 42.5 ± 13.2 PD before the treatment, which decreased to 12.8 ± 11.9 PD after the treatment. Successful motor alignment (orthotropia within 10 PD) was achieved in 60% of the patients. Binary logistic regression analysis revealed that esotropic misalignment and shorter duration of strabismus was significantly associated with treatment success in the study group. Patients with esotropia and lower angles of misalignment were more likely to be treated with a single injection. Conclusion: The use of botulinum toxin A for the treatment of strabismus in children with neurological impairment is a good alternative to conventional surgical therapy with a lower risk of overcorrection. The treatment outcome is better in esodeviations and shorter duration of strabismus, implying an advantage of early treatment.

RESUMO Objetivos: Avaliar a eficácia do uso de toxina bo-tulínica tipo A no tratamento do estrabismo em pacientes com comprometimento neurológico e avaliar os fatores associados ao sucesso do tratamento. Métodos: Cinquenta pacientes com estrabismo e comprometimento neurológico foram incluídos no estudo. Em todas as crianças, a toxina botulínica tipo A foi injetada no músculo extraocular apropriado. A relação entre características demográficas, características clínicas e o sucesso do tratamento foram analisadas. Resultados: No grupo de estudo, 34 pacientes tiveram esotropia e 16 pacientes tiveram exotropia, sendo trinta e seis pacientes com paralisia cerebral e 14 pacientes com hidrocefalia. O tempo médio de acompanhamento foi de 15,3 ± 7,3 meses. O número médio de aplicações foi de 1,4 ± 0,6. O ângulo de desvio médio foi de 42,5 ± 13,2 DP antes do tratamento e diminuiu para 12,8 ± 11,9 DP após o tratamento. Alinhamento motor bem sucedido (ortotropia dentro de 10 DP) foi alcançado em 60% dos pacientes. A análise de regressão logística binária revelou que o desalinhamento esotrópico e uma menor duração do estrabismo foram significativamente associados ao sucesso do tratamento no grupo de estudo. Pacientes esotrópicos com ângulos de desalinhamento menores são mais propensos a serem tratados com uma única aplicação. Conclusão: O uso da toxina botulínica tipo A para o tratamento de estrabismo em crianças com comprometimento neurológico é uma boa alternativa para a terapia cirúrgica convencional com menor risco de hipercorreção. O resultado do tratamento é melhor em exodesvios e em pacientes com estrabismo de menor duração, implicando em vantagem para o tratamento precoce.

Barreiras e facilitadores ambientais na participação da criança com paralisia cerebral em atividades de recreação e lazer: uma revisão integrativa / Environmental barriers and facilitators to the participation of children with cerebral palsy in recreational and leisure activities: an integrative review

Resumo A participação de crianças com paralisia cerebral (PC) em atividades de recreação e lazer pode ser influenciada por fatores ambientais. O reconhecimento e compreensão desses fatores como barreiras ou facilitadores dessas atividades são essenciais para garantir o direito de participação dessas crianças em condições de igualdade com as demais pessoas da sociedade. Neste contexto, o objetivo desta revisão integrativa foi identificar as barreiras e facilitadores ambientais na participação de crianças com PC em atividades de recreação e lazer. Utilizou-se o método de revisão integrativa proposto por Whittemore e Knafl (2005). Estudos publicados entre 2011 e 2022 nos idiomas português e/ou inglês foram selecionados a partir das fontes de indexação MEDLINE via PubMed, EMBASE, SciELO, LILACS, SCOPUS e Web of Science. Nove estudos foram incluídos na revisão - a maioria de desenho transversal e abordagem qualitativa. Os seguintes facilitadores da participação foram identificados: apoio dos pais, pares e professores; interação com adultos; terapias; condições materiais; atividades em casa, na escola e na comunidade; diversidade de brinquedos; e atividades culturais. As seguintes barreiras à participação foram identificadas: falta de acesso a transportes públicos; atitudes negativas; falta de escolha e menor interação dos pais; e falta de adequação das atividades. A Classificação de Funcionalidade, Incapacidade e Saúde (CIF) e os conceitos pirâmide de participação e família de constructos foram fundamentais para identificar as barreiras e facilitadores ambientais na participação de crianças com PC. Sugere-se que estudos futuros sejam conduzidos para avaliar a qualidade e a força da evidência para participantes com 11 anos de idade incompletos.

Abstract The participation of children with cerebral palsy (CP) in recreation and leisure activities can be influenced by environmental factors. The recognition and understanding of these factors as barriers or facilitators of these activities are essential to guarantee the right of these children to participate on equal terms with other people in society. In this context, the objective of this integrative review was to identify environmental barriers and facilitators in the participation of children with CP in recreation and leisure activities. The integrative review method proposed by Whittemore and Knafl (2005) was used. Studies published between 2011 and 2022 in Portuguese and/or English were selected from MEDLINE indexing sources via PubMed, EMBASE, SciELO, LILACS, SCOPUS and Web of Science. Nine studies were included in the review - most of them cross-sectional in design and qualitative in approach. The following participation facilitators were identified: support from parents, peers and teachers; interaction with adults; therapies; material conditions; activities at home, school and in the community; diversity of toys; and cultural activities. The following barriers to participation were identified: lack of access to public transport; negative attitudes; lack of choice and less parental interaction; and lack of adequacy of activities. The Classification of Functioning, Disability and Health (ICF) and the concepts of participation pyramid and family of constructs were fundamental in identifying environmental barriers and facilitators in the participation of children with CP. It is suggested that future studies be conducted to assess the quality and strength of the evidence for participants under 11 years of age.

Characterization of environmental factors in children and adolescents with cerebral palsy in Minas Gerais: Participa Minas / Caracterização de fatores ambientais de crianças e adolescentes com paralisia cerebral de Minas Gerais: Participa Minas

ABSTRACT Objective: To characterize the environmental factors of children and adolescents with Cerebral Palsy (CP) in the state of Minas Gerais (MG), Brazil. Methods: This is a cross-sectional study involving 164 caregivers of children/adolescents with CP, aged 1-14 years. The Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS) were used to classify the participants' functioning, and environmental factors were evaluated by an on-line questionnaire that examined products and technologies, physical environment, services, and systems. A descriptive analysis was performed using percentage and frequency. Results: Most participants had bilateral CP (66.9%) and 45% of them were spastic. Levels II and V of the GMFCS and MACS were the most frequent. About half (49.4%) used anticonvulsants, 27.4% underwent botulinum toxin application, and 29% went through orthopedic surgery in the lower limbs. Among the participants, 71.3% used orthoses in the lower limbs, and 51.8% used the public health care system. Most had access to physiotherapy (91.5%), but found difficulties to access interventions with other professionals, such as psychologists (28%) and nutritionists (37.8%). The school was the most frequently adapted environment (78%), and had the highest level of structural adaptation (42.7%). Conclusions: The results of this study suggest that the barriers to access health services and barriers to the physical environment may impact participation and social inclusion.

RESUMO Objetivo: Caracterizar os fatores ambientais de crianças e adolescentes com paralisia cerebral (PC) no estado de Minas Gerais (MG), Brasil. Métodos: Trata-se de um estudo transversal envolvendo 164 cuidadores de crianças/adolescentes com PC, na faixa etária de um a 14 anos. O Sistema de Classificação da Função Motora Grossa (GMFCS) e o Sistema de Classificação da Habilidade Manual (MACS) foram utilizados para classificar a funcionalidade dos participantes e os fatores ambientais foram avaliados por um questionário on-line que abordou produtos e tecnologias, ambiente físico, serviços e sistemas. Análises descritivas foram realizadas por meio de porcentagem e frequência. Resultados: A maioria dos participantes tinha PC bilateral (66,9%) e 45% deles eram espásticos. Os níveis II e V do GMFCS e MACS foram os mais frequentes. Cerca de metade (49,4%) fazia uso de anticonvulsivantes, 27,4% realizaram aplicação de toxina botulínica e 29% cirurgia ortopédica em membros inferiores. Utilizavam órteses em membros inferiores 71,3% e eram usuários do sistema público de saúde 51,8%. A maioria tinha acesso à fisioterapia (91,5%), mas dificuldade de acesso a intervenções com outros profissionais, como psicólogos (28%) e nutricionistas (37,8%). A escola foi o ambiente mais frequentado (78%) e também mais adaptado estruturalmente (42,7%). Conclusões: Os resultados deste estudo sugerem que barreiras de acesso aos serviços de saúde e barreiras no ambiente físico podem impactar a participação e inclusão social.

The effect of constraint-induced movement therapy assessed by accelerometry: the impact on daytime activity and sleep in children with cerebral palsy / O efeito da terapia por contensão induzida avaliada por meio de acelerômetros: o impacto na atividade diurna e no sono em crianças com paralisia cerebral

Abstract Introduction Spastic hemiparetic cerebral palsy (CP) is the most prevalent type of CP. Children with spastic hemiparesis experience difficulties when using their affected upper extremities, and one effective treatment is the Constraint-Induced Movement Therapy (CIMT). The study of rest-activity patterns provides information on children's daily activities with spastic hemiparetic CP during the day and sleep. Objective To investigate the effect of CIMT on the rest-activity patterns in children with spastic hemiparetic CP vs in a healthy group. Methods Nonrandomized controlled trial was conducted at the Neuropediatric Center of the Hospital de Clínicas Complex, in Curitiba, Brazil. Children with spastic hemi-paretic CP between 5 and 16 years old participated in the study group and receive the CIMT. The healthy group was composed of children between 5 and 15 years old. Both groups used accelerometer to record rest-activity patterns, that may be studied through nonparametric variables of accelerometer: M10 (an individual's most active 10h); L5 (an individual's least active 5h); and RA (relative amplitude of the circadian rest-activity patterns). Results Forty-five children were recruited, and 38 were included in the analyses (19 allocated to each group). In the study group, there was a significant increase in M10 and L5 (p < 0.001) after CIMT. The values of M10 and L5 were significantly higher (p < 0.001) in the healthy group compared to the study group after CIMT. Conclusion Our results showed that children with spastic hemiparetic CP became more active and participant in their daily life during the day as well as more efficient sleeping.

Resumo Introdução A paralisia cerebral (PC) hemiparética espástica é o tipo de PC mais prevalente. Crianças com hemiparesia es-pástica apresentam dificuldades ao usar as extremidades superiores afetadas e um tratamento eficaz é a Terapia por Contensão Induzida (TCI). O estudo dos padrões de atividade-repouso fornece informações sobre as atividades diárias de crianças com PC hemiparética espástica durante o dia e o sono. Objetivo Investigar o efeito da TCI nos padrões de repouso-atividade em crianças com PC hemiparética espástica versus um grupo saudável. Métodos Realizou-se um ensaio controlado não randomizado no Centro de Neuropediatria do Complexo do Hospital de Clínicas, Curitiba, Brasil. Crianças com PC hemi-parética espástica entre 5 e 16 anos participaram do grupo de estudo e receberam a TCI. O grupo saudável foi composto por crianças entre 5 e 15 anos. Ambos os grupos utilizaram um acelerômetro para registrar padrões de atividade-repouso, os quais podem ser estudados através de variáveis não paramé-tricas do acelerômetro: M10 (10h mais ativas de um indivíduo); L5 (5h menos ativas de um indivíduo); e AR (amplitude rela-tiva dos padrões de atividade-repouso). Resultados Foram recrutadas 45 crianças e 38 foram incluídas nas análises (19 alocadas em cada grupo). No grupo de estudo, houve aumento significativo de M10 e L5 (p < 0,001) após TCI. Os valores de M10 e L5 foram significativamente maiores (p < 0,001) no grupo saudável em comparação ao grupo de estudo após TCI. Conclusão Os resultados do presente estudo mostraram que crianças com PC hemiparética espástica tornaram-se mais ativas e participantes de sua vida diária durante o dia, bem como dormiram mais eficientemente.

The state of the art in therapeutic administration of botulinum toxin in children with cerebral palsy: an integrative review / O estado da arte em aplicação terapêutica de toxina botulínica em crianças com paralisia cerebral: uma revisão integrativa

ABSTRACT Objective: To describe the current state of the art in the therapeutic administration of botulinum toxin with indications, efficacy, and safety profile for children and adolescents with cerebral palsy. Data source: An integrative review was conducted. The MEDLINE/PubMed database was searched twice within the last decade using distinct terms, and only studies written in the English language were included. The study population was limited to those aged 0-18 years. Articles that were duplicates or lacked sufficient methodology information were excluded. Data synthesis: We found 256 articles, of which 105 were included. Among the included studies, most were conducted in developed countries. Botulinum toxin demonstrated good safety and efficacy in reducing spasticity, particularly when administered by a multidisciplinary rehabilitation team. It is primarily utilized to improve gait and upper limb function, facilitate hygiene care, reduce pain, prevent musculoskeletal deformities, and even decrease sialorrhea in patients without a functional prognosis for walking. Conclusions: The administration of botulinum toxin is safe and efficacious, especially when combined with a multi-professional rehabilitation team approach, which increases the probability of functional improvement. It can also be beneficial for patients with significant functional impairments to help with daily care tasks, such as hygiene, dressing, and reducing sialorrhea. Pediatricians must be familiar with this treatment and its indications to attend to and refer patients promptly when necessary, and to exploit their neuroplasticity. Further research on this topic is required in developing countries.

RESUMO Objetivo: Descrever o estado da arte em aplicação terapêutica de toxina botulínica com indicações, eficácia e perfil de segurança em crianças e adolescentes com paralisia cerebral. Fontes de dados: Realizada revisão integrativa através de busca na base de dados MEDLINE/PubMed em dois momentos nos últimos 10 anos, e termos distintos, em inglês, numa população entre 0 e 18 anos de idade. Excluiu-se artigos duplicados ou com informações insuficientes de metodologia. Síntese dos dados: 256 artigos foram encontrados e 105 foram incluídos, sendo a maior parte realizados em países desenvolvidos. A toxina botulínica mostrou boa segurança e efetividade na redução da espasticidade, especialmente administrada por uma equipe de reabilitação multiprofissional, usada principalmente para: melhora da marcha e da função dos membros superiores, facilitação dos cuidados de higiene, analgesia e prevenção de deformidades musculoesqueléticas, além de redução da sialorreia, inclusive em pacientes sem prognóstico funcional de marcha. Conclusões: A aplicação de toxina botulínica foi efetiva e segura, principalmente quando atrelada a uma abordagem por equipe de reabilitação multiprofissional, o que aumenta as chances de melhora funcional. Mostrou-se benéfica também para pacientes com grandes comprometimentos funcionais para facilitar os seus cuidados diários em relação à higiene, colocar e tirar roupas e redução da sialorreia. O pediatra deve estar familiarizado com esse tratamento e suas indicações para atender e direcionar pacientes o mais breve possível quando indicado e aproveitar o máximo de neuroplasticidade. Há necessidade de investimentos em mais pesquisas sobre este tema em países em desenvolvimento.

Translation and measurement properties of the Portuguese-Brazil version of the Hammersmith Infant Neurological Examination (HINE-Br) / Tradução e propriedades de medida da versão Português-Brasil do Hammersmith Infant Neurological Examination (HINE-Br)

ABSTRACT Objective: The current study aimed to translate the Hammersmith Infant Neurological Examination (HINE) into Brazilian Portuguese and analyze the reliability of the translated version for a population of Brazilian infants. Methods: This was a methodological study, approved by the Ethics Committee, carried out between June 2020 and May 2021. HINE is a standardized clinical neurological examination used for the early detection of cerebral palsy. The quantitative section, "neurological examination", contains 26 items scored from 0 to 3 points, divided into five categories: cranial nerve function, posture, movements, muscle tone and reflexes, and reactions. The HINE translation followed four steps: translation, synthesis, back-translation, and evaluation by an expert committee. To verify the reliability of the HINE-Br (Portuguese-Brazil version) two independent examiners evaluated 43 infants, between 3 and 22 months of age. Internal consistency was verified by Cronbach's Alpha coefficient and interrater reliability by the intraclass correlation coefficient (ICC). Results: The translated version was similar to the original version and a few semantic and idiomatic adjustments were necessary. Appropriate internal consistency (Alpha=0.91) was found for the 26 items of the HINE-Br, as well as strong interrater reliability for the total score (ICC2.1=0.95), and also for the five categories (ICC2.1=0.83-0.95). Conclusions: The HINE-Br presents adequate rates of internal consistency and interrater reliability, and can be used for the evaluation of children at risk for cerebral palsy, between 3 and 24 months of age, by pediatricians and pediatric physical therapists.

RESUMO Objetivo: Traduzir o Hammersmith Infant Neurological Examination (HINE) para o português brasileiro e analisar a confiabilidade da versão traduzida em lactentes brasileiros. Métodos: Estudo metodológico, aprovado por Comitê de Ética, realizado entre junho de 2020 e maio de 2021. O HINE é um exame clínico neurológico padronizado, utilizado para detecção precoce de paralisia cerebral. A seção quantitativa, "exame neurológico", contém 26 itens pontuados de 0 a 3, divididos em 5 categorias: função dos nervos cranianos; postura; movimentos; tônus muscular e reflexos; e reações. A tradução do HINE seguiu quatro etapas: tradução; síntese; retrotradução; e avaliação por um comitê de especialistas. Dois examinadores independentes avaliaram 43 lactentes, entre 3 e 22 meses, utilizando a versão HINE-Br (versão em português brasileiro), para verificar sua confiabilidade. A consistência interna foi verificada pelo coeficiente Alpha de Cronbach e a confiabilidade interexaminadores pelo coeficiente de correlação intraclasse (CCI). Resultados: A versão traduzida foi semelhante à versão original e poucos ajustes semânticos e idiomáticos foram necessários. Encontrou-se consistência interna adequada (Apha=0,91) para os 26 itens do HINE-Br, bem como forte confiabilidade interexaminadores para o escore total (CCI2,1=0,95) e também para as cinco categorias (CCI2,1=0,83-0,95). Conclusões: O HINE-Br apresenta índices adequados de consistência interna e confiabilidade interexaminadores, podendo ser utilizada para avaliação de crianças com risco de apresentar paralisia cerebral, entre 3 e 24 meses de idade, por pediatras e fisioterapeutas infantis.

Cerebral palsy and sleep: nonpharmacological treatment and impact on the life of caregivers - an integrative review / Paralisia cerebral e sono: tratamento não farmacológico e impacto na vida dos cuidadores - uma revisão integrativa

Abstract Background Children with cerebral palsy have a higher prevalence of sleep disorders, with numerous factors associated with a negative impact on the quality of life of caregivers. Objective To identify factors related to sleep disorders, nonpharmacological treatment, and the impact on the lives of caregivers. Methods The present literature review was carried out in the Latin American and Caribbean Center on Health Sciences Information (BIREME), the Cochrane Library, Scopus, PubMed, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, WorldCat, Web of Science, Latin American Literature on Health Sciences (LILACS), and Excerpta Medica Database (EMBASE), with the descriptors sleep, child, cerebral palsy, parents, and nursing. Studies available in Portuguese, English, or Spanish, published between 2010 and 2020, were our inclusion criteria. A total of 29 articles were included in the present review. Results We considered nonpharmacological interventions effective support measures to drug-based treatments. The main sleep disorders in children with cerebral palsy are insomnia, parasomnias, nightmares, sleep bruxism, sleepwalking, sleep talking, disorders of initiation and maintenance of sleep, and sleep hyperhidrosis. Most studies point to a reduction in the quality of life of caregivers whose children have sleep disorders. Conclusion Our review suggests the effectiveness of nonpharmacological treatments combined with the use of medications. Measures such as changes in sleep environment and routine are favorable strategies to improve sleep quality. In addition, children with sleep disorders negatively impact the quality of life of their caregivers.

Resumo Antecedentes Crianças com paralisia cerebral apresentam maior prevalência de distúrbios do sono, com inúmeros fatores associados a um impacto negativo na qualidade de vida dos cuidadores. Objetivo Identificar fatores relacionados aos distúrbios do sono, o tratamento não farmacológico e o impacto na vida dos cuidadores. Métodos Esta revisão da literatura foi realizada no Centro Latino-Americano e do Caribe de Informação em Ciências da Saúde (BIREME), Biblioteca Cochrane, Scopus, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, WorldCat, Web of Science, Literatura Latino-Americana em Ciências da Saúde (LILACS) e Excerpta Medica Database (EMBASE), com os descritores sono, criança, paralisia cerebral, pais e enfermagem. Estudos disponíveis em português, inglês ou espanhol, publicados entre 2010 e 2020, foram nossos critérios de inclusão. Ao todo, 29 artigos foram incluídos nesta revisão. Resultados Consideramos as intervenções não farmacológicas medidas eficazes de apoio aos tratamentos medicamentosos. Os principais distúrbios do sono em crianças com paralisia cerebral são: insônia, parassonias, pesadelos, bruxismo do sono, sonambulismo, falar dormindo, distúrbios de iniciação e manutenção do sono e hiperidrose do sono. A maioria dos estudos aponta redução na qualidade de vida de cuidadores de crianças com distúrbios do sono. Conclusão Nossa revisão sugere a eficácia de tratamentos não farmacológicos combinados com o uso de medicamentos. Medidas como mudanças no ambiente e na rotina do sono são estratégias favoráveis para melhorar a qualidade do sono. Além disso, crianças com distúrbios do sono provocam impactos negativos na qualidade de vida de seus cuidadores.