RESUMO
El acceso a una salud integral de calidad a lo largo de la vida es un derecho de todos los adolescentes y jóvenes; pero sobre todo resulta relevante en aquellos pacientes con enfermedades complejas crónicas como el mielomeningocele pues de no realizarse tiene repercusión notoria sobre su estado de salud con mayor riesgo de morbimortalidad. En este artículo se comenta la experiencia sobre transición de pacientes con mielomeningocele que se realizó en forma organizada entre los servicios de Consultorio de Mielomeningocele y Hospital de día Polivalente del Hospital Garrahan y el Servicio de Adolescencia del Hospital Ramos Mejía. Se trata de un nuevo modelo asistencial de trabajo interdisciplinario y colaborativo teniendo como eje una fluida comunicación interinstitucional. Este acuerdo formal entre ambos hospitales contó con el recurso humano especializado y la estructura física adecuada para el abordaje integral de esta compleja enfermedad crónica. Este programa propició un entorno al paciente que aseguró el seguimiento por equipos interdisciplinarios. Esta es la mejor opción para brindar un cuidado integral, equitativo, coordinado y accesible mejorando la calidad de vida de los pacientes con mielomeningocele a largo plazo (AU)
Access to quality comprehensive health throughout life is a right of all adolescents and young people; but above all it is relevant in those patients with complex chronic diseases such as myelomeningocele because if it is not performed it has a notable impact on their health status with a greater risk of morbidity and mortality. This article discusses the transition experience of patients with myelomeningocele that was carried out in an organized manner between the Myelomeningocele Clinic and Multipurpose Day Hospital services of the Garrahan Hospital and the Adolescence Service of the Ramos Mejía Hospital. It is a new care model of interdisciplinary and collaborative work with fluid inter-institutional communication as its axis. This formal agreement between both hospitals had specialized human resources and the appropriate physical structure for the comprehensive approach to this complex chronic disease. This program provided an environment for the patient that ensured follow-up by interdisciplinary teams. This is the best option to provide comprehensive, equitable, coordinated and accessible care, improving the quality of life of patients with myelomeningocele in the long term (AU)
Assuntos
Humanos , Adolescente , Equipe de Assistência ao Paciente , Disrafismo Espinal/terapia , Meningomielocele/terapia , Transição para Assistência do Adulto/organização & administração , Doença CrônicaRESUMO
ABSTRACT Introduction: Defective closure of the neural tube affects different systems and generates sequelae, such as neurogenic bladder (NB). Myelomeningocele (MMC) represents the most frequent and most severe cause of NB in children. Damage of the renal parenchyma in children with NB acquired in postnatal stages is preventable given adequate evaluation, follow-up and proactive management. The aim of this document is to update issues on medical management of neurogenic bladder in children. Materials and Methods: Five Pediatric Urologists joined a group of experts and reviewed all important issues on "Spina Bifida, Neurogenic Bladder in Children" and elaborated a draft of the document. All the members of the group focused on the same system of classification of the levels of evidence (GRADE system) in order to assess the literature and the recommendations. During the year 2020 the panel of experts has met virtually to review, discuss and write a consensus document. Results and Discussion: The panel addressed recommendations on up to date choice of diagnosis evaluation and therapies. Clean intermittent catheterization (CIC) should be implemented during the first days of life, and antimuscarinic drugs should be indicated upon results of urodynamic studies. When the patient becomes refractory to first-line therapy, receptor-selective pharmacotherapy is available nowadays, which leads to a reduction in reconstructive procedures, such as augmentation cystoplasty.
Assuntos
Humanos , Criança , Bexiga Urinaria Neurogênica/terapia , Disrafismo Espinal , Meningomielocele/complicações , Meningomielocele/terapia , Cateterismo Uretral Intermitente , UrodinâmicaRESUMO
INTRODUCTION: Defective closure of the neural tube affects different systems and generates sequelae, such as neurogenic bladder (NB). Myelomeningocele (MMC) represents the most frequent and most severe cause of NB in children. Damage of the renal parenchyma in children with NB acquired in postnatal stages is preventable given adequate evaluation, follow-up and proactive management. The aim of this document is to update issues on medical management of neurogenic bladder in children. MATERIALS AND METHODS: Five Pediatric Urologists joined a group of experts and reviewed all important issues on "Spina Bifida, Neurogenic Bladder in Children" and elaborated a draft of the document. All the members of the group focused on the same system of classification of the levels of evidence (GRADE system) in order to assess the literature and the recommendations. During the year 2020 the panel of experts has met virtually to review, discuss and write a consensus document. RESULTS AND DISCUSSION: The panel addressed recommendations on up to date choice of diagnosis evaluation and therapies. Clean intermittent catheterization (CIC) should be implemented during the first days of life, and antimuscarinic drugs should be indicated upon results of urodynamic studies. When the patient becomes refractory to first-line therapy, receptor-selective pharmacotherapy is available nowadays, which leads to a reduction in reconstructive procedures, such as augmentation cystoplasty.
Assuntos
Cateterismo Uretral Intermitente , Meningomielocele , Disrafismo Espinal , Bexiga Urinaria Neurogênica , Criança , Humanos , Meningomielocele/complicações , Meningomielocele/terapia , Bexiga Urinaria Neurogênica/terapia , UrodinâmicaAssuntos
Humanos , Masculino , Feminino , Recém-Nascido , Meningomielocele/diagnóstico , Meningomielocele/terapiaRESUMO
INTRODUCTION: Myelomeningocele is a severe type of spina bifida, resulting from improper closure of the neural tube. This condition drastically affects the structures of the spinal cord resulting in deficiencies. The combination of these deficiencies results in an overall decrease in mobility and functional participation amongst this population. Physiotherapy plays an essential role in rehabilitating people with MMC. The current literature shows that resources such as photobiomodulation (PBM) may support the rehabilitation of neurological conditions. The aim of the proposed study is to evaluate the effects of photobiomodulation (PBM) combined with physical therapy on functional performance in children with low lumbosacral myelomeningocele. MATERIALS AND METHODS: This is a protocol randomized clinical blind study, that will include 30 individuals of both sexes, aged between 5 to 8 years, diagnosed with low and sacral lumbar myelomeningocele and capable of performing the sit-to-stand task. The participants will be randomly assigned into two treatment groups: PBM + physiotherapeutic exercises and sham PBM + physiotherapeutic exercises. Irradiation will be carried out with light emitting diode (LED) at a wavelength of 850 nm, energy of 25 J per point, 50 seconds per point and a power of 200 mW. The same device will be used in the placebo group but will not emit light. Muscle activity will be assessed using a portable electromyograph (BTS Engineering) and the sit-to-stand task will be performed as a measure of functioning. Electrodes will be positioned on the lateral gastrocnemius, tibialis anterior and rectus femoris muscles. The Pediatric Evaluation of Disability Inventory will be used to assess functional independence. Quality of life will be assessed using the Child Health Questionnaire-Parent Form 50. Changes in participation will be assessed using the Participation and Environment Measure for Children and Youth. The data will be analyzed with the aid of GraphPad PRISM. DISCUSSION: The results of this study can contribute to a better understanding of the effectiveness of PBM on functioning and quality of life in children with myelomeningocele. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04425330.
Assuntos
Meningomielocele/fisiopatologia , Meningomielocele/terapia , Criança , Pré-Escolar , Avaliação da Deficiência , Exercício Físico/fisiologia , Terapia por Exercício/métodos , Feminino , Humanos , Terapia com Luz de Baixa Intensidade/métodos , Masculino , Desempenho Físico Funcional , Modalidades de Fisioterapia , Músculo Quadríceps/fisiopatologia , Qualidade de VidaRESUMO
Objective: to understand the experience of families in the care of children with myelomeningocele. Method: a qualitative research study, which adopted Symbolic Interactionism and Grounded Theory as its theoretical and methodological framework, and the semi-structured interview as a data collection instrument. Twenty-eight participants from thirteen families living in a municipality in the inland of São Paulo took part in the study. Results: the family tirelessly seeks better health and life conditions for the child with myelomeningocele; aiming at the child's autonomy, it is mobilized to the necessary treatments, to learn the care, to adapt the routine, as well as to supply for all the child's needs so that it reaches potential development, looking for a less dependent future with inclusion and social ascension. Conclusion: family nursing shows potential support in the face of myelomeningocele, due to its ability to apprehend the family system, evaluate it and enable intervention proposals in the care process. In this study, rehabilitation nursing was also emphasized, since it goes together with the child and the family who experience myelomeningocele.
Objetivo: compreender a experiência de famílias no cuidado de crianças com mielomeningocele. Método: pesquisa qualitativa, que adotou como referencial teórico e metodológico o Interacionismo Simbólico e a Teoria Fundamentada nos Dados, e a entrevista semiestruturada como instrumento de coleta de dados. Vinte e oito participantes de treze famílias residentes em um município do interior paulista integraram o estudo. Resultados: a família busca incansavelmente por melhores condições de saúde e vida para o filho com mielomeningocele; objetivando a autonomia da criança, se mobiliza aos tratamentos necessários, a aprender os cuidados, a adaptar a rotina, assim como suprir por todas as necessidades da criança a fim de que esta alcance desenvolvimento potencial, prospectando um futuro menos dependente com inclusão e ascensão social. Conclusão: a enfermagem familiar mostra-se apoio potencial frente à condição da mielomeningocele, devido à sua capacidade de apreender o sistema familiar, avaliá-lo e possibilitar proposições de intervenção no processo de cuidado. Neste estudo enfatizou-se também a enfermagem de reabilitação, uma vez que esta caminha conjuntamente à criança e à família que experienciam a mielomeningocele.
Objetivo: comprender la experiencia de las familias en el cuidado de niños con mielomeningocele. Método: investigación cualitativa, que adoptó el Interaccionismo Simbólico y la Teoría Fundamentada como marco teórico y metodológico, y la entrevista semiestructurada como instrumento de recolección de datos. Participaron del estudio 28 participantes de trece familias residentes en una ciudad del interior de São Paulo. Resultados: la familia busca sin cesar mejores condiciones de vida y salud para el niño con mielomeningocele; con el objetivo de estimular la autonomía del niño, se realizan los tratamientos necesarios, se aprenden los cuidados, se adecua la rutina y se satisfacen todas las necesidades del niño para que alcance su desarrollo potencial, proyectando un futuro menos dependiente con inclusión y ascensión social. Conclusión: la enfermería familiar muestra un potencial apoyo frente a la condición de mielomeningocele, debido a su capacidad para aprehender el sistema familiar, evaluarlo y posibilitar propuestas de intervención en el proceso de atención. En este estudio también se enfatizó la enfermería de rehabilitación, ya que va de la mano del niño y la familia que padecen mielomeningocele.
Assuntos
Humanos , Masculino , Feminino , Criança , Cuidado da Criança , Doença Crônica , Inquéritos e Questionários , Meningomielocele/reabilitação , Meningomielocele/terapia , Relações Familiares , Teoria FundamentadaRESUMO
OBJECTIVE: To evaluate the immediate response of electrical stimulation in children with neurogenic bladder (NB) due to myelomeningocele, using the urodynamic study (UDS). METHODS: This is a nonrandomized intervention study with 26 children with neurogenic overactive bladder and low bladder compliance due to myelomeningocele, aged 5 to 15 years. Each child performed a routine UDS and then a second UDS, during which the electrical stimulation was applied in the parasacral region. The main outcome was the difference in the maximum bladder pressure observed between the two urodynamic studies, analyzed from the paired t test. RESULTS: We found that 77% of the patients had a lower maximum bladder pressure in the test with electrostimulation compared with the ones without electrostimulation. On average, the pressure reduction after stimulation was 7.24 cmH2 O (95% confidence interval [CI], 0.35-14.14; P = .04). The reduction was even higher in children under 12 years of age, compared with the children above 12 years (11.29 cmH2 O, 95% CI, 3.47-19.12; P = .01). CONCLUSION: The use of transcutaneous electrical nerve stimulation had a significant immediate effect on reducing the maximum bladder pressure during the urodynamic studies among the tested pediatric patients with NB. The results were more significant among children under 12 years of age.
Assuntos
Meningomielocele/terapia , Meningomielocele/urina , Estimulação Elétrica Nervosa Transcutânea/métodos , Urodinâmica , Adolescente , Envelhecimento , Criança , Feminino , Humanos , Masculino , Meningomielocele/complicações , Estudos Prospectivos , Estimulação Elétrica Nervosa Transcutânea/efeitos adversos , Bexiga Urinaria Neurogênica/etiologia , Bexiga Urinária Hiperativa/terapiaRESUMO
Objetivo: Avaliar a resposta imediata da eletroestimulação nervosa transcutânea em crianças com bexiga neurogênica por mielomeningocele, utilizando o estudo urodinâmico. Métodos: Trata-se de um estudo de intervenção não randomizado, pareado, com 26 crianças com bexiga hiperativa neurogênica ou baixa complacência vesical por mielomeningocele, com idades entre 5 e 15 anos. Cada criança realizou um estudo urodinâmico de rotina e em seguida, um segundo estudo urodinâmico, durante o qual a estimulação elétrica foi aplicada na região parassacral. O principal desfecho foi a diferença na pressão máxima da bexiga observada entre os dois estudos urodinâmicos, analisados pelo teste t pareado. Resultados: Constatamos que 77% dos pacientes apresentaram pressão máxima da bexiga mais baixa no teste com eletroestimulação em comparação ao estudo urodinâmico sem eletroestimulação. Em média, a redução da pressão após a estimulação foi de 7,24 cmH2O (IC95% 0,35-14,14, valor de p = 0,04). A redução média foi ainda maior em crianças menores de 12 anos (11,29 cmH2O, IC95% 3,47 ;19,12), comparada a das crianças com mais de 12 anos (-3,74 cmH2O, IC95% - 11,63; 4,14, valor de p = 0,01). Conclusão: O uso da TENS teve um efeito imediato significativo na redução da pressão máxima da bexiga durante os estudos urodinâmicos entre os pacientes pediátricos testados com bexiga neurogênica. Os resultados foram mais significativos em crianças menores de 12 anos.
Objective: To evaluate the immediate response of electrical stimulation in children with neurogenic bladder due to myelomeningocele, using the urodynamic study. Methods: This is a non-randomized paired intervention study with twenty-six children with neurogenic overactive bladder or low bladder compliance due to myelomeningocele, aged 5-15 years. Each child performed a routine urodynamic study and then a second urodynamic study, during which the electrical stimulation was applied in the parasacral region. The main outcome was the difference in the maximum bladder pressure observed between the two urodynamic studies, analyzed from the paired t-test. Results: We found that 77% of the patients had a lower maximum bladder pressure in the test with electrostimulation compared to the one without electrostimulation. On average, the pressure reduction after stimulation was 7.24 cmH2O (95% CI 0.35-14.14, p-value=0.04). The mean reduction was even higher in children under 12 years of age (11.29 cmH2O, 95% CI 3.47 19.12), compared to children above 12 years (-3,74 cmH2O, 95% CI - 11.63 4.14, p-value=0.01). Conclusion: The use of TENS had a significant immediate effect on reducing the maximum bladder pressure during the urodynamic studies among the tested pediatric patients with neurogenic bladder. The results were more significant among children under 12 years of age.
Assuntos
Humanos , Criança , Adolescente , Bexiga Urinaria Neurogênica , Estimulação Elétrica Nervosa Transcutânea/métodos , Terapia por Estimulação Elétrica , Meningomielocele/terapiaRESUMO
PURPOSE: The purpose of this study was to describe and compare factors that affect urinary tract infection (UTI) rates in people with spina bifida (SB) and neurogenic bladder dysfunction before and following initiation of intermittent catheterization (IC). DESIGN: A quantitative, descriptive, correlational study. SUBJECTS AND SETTING: The study included people who were from Germany, a high-income nation, and Brazil, a middle-income nation. Brazilian participants were recruited from a public rehabilitation hospital in the state of Minas Gerais. German participants were drawn from different regions of the country. The study sample included 200 participants; participants were either individuals diagnosed with SB and neurogenic bladder dysfunction and using IC, or caregivers of persons using IC for bladder management. METHODS: Data were collected through a survey questionnaire developed for urological follow-up of SB patients. A translated and validated version of the form was used to collect data in Germany. To evaluate annual episodes of UTI, we considered the number of symptomatic UTI before and after IC. RESULTS: Participants from Brazil were significantly younger than German patients (median age 9 vs 20 years, P < .001). Brazilians predominately used assisted catheterization (63.0%), whereas most Germans performed self-catheterization (61.0%). Use of IC greatly reduced the incidence of UTI in both groups (mean 2.8 episodes per year before IC vs mean 1.1 episodes after starting IC, P < .001). Women had a higher number of UTI, both before and after IC, but enjoyed greater reduction in UTI after initiating IC than men. Self-catheterization also promoted a greater reduction of UTI than assisted IC (P = .022). CONCLUSIONS: Intermittent catheterization reduced annual episodes of UTI in both samples despite differences in catheterization technique. Patients practicing and performing self-catheterization achieved a greater reduction than those who relied on assisted IC. Comparative studies among additional countries with varying median income levels are needed to better understand the needs of individuals with SB and their families, and to plan and implement safe nursing interventions.
Assuntos
Infecções Relacionadas a Cateter/complicações , Cateterismo Uretral Intermitente/efeitos adversos , Infecções Urinárias/etiologia , Adolescente , Adulto , Análise de Variância , Brasil/epidemiologia , Infecções Relacionadas a Cateter/epidemiologia , Criança , Pré-Escolar , Feminino , Alemanha/epidemiologia , Humanos , Lactente , Cateterismo Uretral Intermitente/métodos , Masculino , Meningomielocele/complicações , Meningomielocele/terapia , Pessoa de Meia-Idade , Disrafismo Espinal/complicações , Disrafismo Espinal/terapia , Estatísticas não Paramétricas , Inquéritos e Questionários , Bexiga Urinaria Neurogênica/complicações , Bexiga Urinaria Neurogênica/terapia , Infecções Urinárias/epidemiologiaRESUMO
OBJECTIVE: To assess the role of magnetic resonance imaging (MRI) in the management of myelomenigocele. BACKGROUND: Spinal dysraphism or neural tube defects (NTD) encompass a heterogeneous group of congenital spinal anomalies that result from the defective closure of the neural tube early in gestation. Myelomeningocele is the most common type of NTD that is compatible with life, with high survival rates but lifelong physical impairments. CONCLUSION: MRI is an important adjunct to ultrasound in assessing NTD, as it pertains to pre-surgical planning and perinatal management. However, it should not be considered a replacement for ultrasonography, which continues to be the gold standard for fetal anatomic evaluation.
Assuntos
Gerenciamento Clínico , Imageamento por Ressonância Magnética/métodos , Meningomielocele/diagnóstico por imagem , Meningomielocele/terapia , Diagnóstico Pré-Natal/métodos , HumanosRESUMO
PURPOSE: Patients with myelomeningocele have a high mortality and neurological disabilities that are correlated with the anatomical characteristics of the defect and with the development of acquired complications. The challenge in the postnatal management of myelomeningocele (MMC) is the early recognition of cases at risk for complications in order to establish individualized treatment strategies. This study aims to identify short-term prognostic markers for newborns with MMC. Anatomical characteristics of the spinal defect and technical aspects of the neurosurgical correction were analyzed for this purpose. METHODS: A retrospective cohort study was conducted in 70 patients with MMC born between January 2007 and December 2013. Features of MMC anatomy and neurosurgical treatment were analyzed for the following outcomes: neonatal resuscitation, length of hospital stay, need for ventricular shunt, wound dehiscence, wound infection, central nervous system infection, and sepsis. RESULTS: Large MMC was associated with central nervous system (CNS) infection, wound complications, and longer hospital stay. Patients with thoracic MMC required longer hospital stay. Surgical repair performed after 48 h of life increased in 5.72 times the risk of CNS infection. Absence of antenatal hydrocephalus was a favorable prognostic marker. CONCLUSION: Extent of the spinal cord defect and the time of surgical correction influenced the short-term outcomes of patients with myelomeningocele. Extensive lesions were associated with higher rates of CNS infections, surgical wound complications, and prolonged hospital stay. Interventions performed within 48 h after birth significantly reduced occurrence of CNS infections. Absence of antenatal hydrocephalus was associated with fewer complications in the first days of life.
Assuntos
Hidrocefalia/etiologia , Meningomielocele/diagnóstico , Procedimentos Neurocirúrgicos/métodos , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Idade Gestacional , Humanos , Hidrocefalia/terapia , Lactente , Masculino , Meningomielocele/complicações , Meningomielocele/terapia , Diagnóstico Pré-Natal , Medula Espinal/patologia , Fatores de TempoRESUMO
OBJECTIVE: To study the acquisition of independent sitting posture in patients with high lumbar and thoracic myelomeningocele (MMC). METHOD: Cross-sectional study in children aged between 6 months and 4 years with MMC. A research was done in medical records and report cards from children being followed in the physical therapy sector at Fernandes Figueira Institute (IFF), Rio de Janeiro, RJ, Brazil. RESULTS: The sample comprised 16 children with MMC, 9 (56%) female and 7 (43%) male, 13 (81.2%) children with high lumbar level, and 3 (18.8%) with thoracic level. In relation to independent sitting posture, 13 (81.2%) achieved this OBJECTIVE. The average time to reach this posture was 16 months (9-31). The average time of physiothe-rapeutic following was 3 months (1-8). Among the 13 children who sat, 2 (15.4%) were thoracic and 11 (84.6%) high lumbar level cases. Most (15 - 93.8%) performed regular physical therapy. The average age to start treatment was 3 months (1-8). CONCLUSION: It was observed that the largest part of the sample acquired independent sitting posture, including the thoracic level cases that reached this goal in a younger age than the found in the literature. The results can be con-sidered positive, reinforcing the early physiotherapeutic intervention for the acquisition of motor development, promotion of functionality, and improvement of quality of life of children with MMC.
OBJETIVO: Estudar a aquisição da postura sentada independente em pacientes com mielomeningocele (MMC) nos segmentos torácicos e lombares altos. MÉTODO: Estudo transversal em crianças com ida-de entre 6 meses e 4 anos diagnosticadas com MMC. A pesquisa foi realizada em prontuários de crianças acompanhadas no setor de fisioterapia do Instituto Fernandes Figueira (IFF), Rio de Janeiro, RJ, Brasil. RESULTADOS: A amostra foi composta por 16 crianças com MMC, 9 (56%) do sexo feminino e 7 (43%) do sexo masculino, sendo 13 (81,2%) com nível lombar alto e 3 (18,8%) com nível torácico. Em relação à postura sentada independente, 13 (81,2%) alcançaram esse objetivo. A média para chegar a essa postura foi de 16 meses (9-31). O tempo médio de acompanhamento fisioterápico foi de três meses (1-8 meses). Entre as 13 crianças que sentaram, 2 (15,4%) tinham nível torácico e 11 (84,6%), nível lombar alto. A maior parte da amostra (15 - 93,8%) realizou fisioterapia regular. A idade média para iniciar a fisioterapia foi de 3 meses (1-8). CONCLUSÃO: A maior parte da amostra adquiriu postura sentada independente, incluindo o nível torácico, que atingiu esse objetivo com a idade menor do que a encontrada na literatura. Os resultados podem ser considerados positivos, reforçando a intervenção fisioterápica precoce para aquisição do desenvolvimento motor, promoção de funcionalidade e melhora da qualidade de vida de crianças com MMC.
Assuntos
Humanos , Masculino , Feminino , Lactente , Pré-Escolar , Postura , Disrafismo Espinal/terapia , Meningomielocele/reabilitação , Meningomielocele/terapia , Modalidades de Fisioterapia , Estudos Transversais , Resultado do Tratamento , Destreza MotoraRESUMO
AIMS: Compare the need for neonatal resuscitation procedures between newborn infants with and without meningomyelocele (MMC). RESULTS: This retrospective case-control study included 94 neonates with MMC, defined as open spinal dysraphism with exposure of nervous tissue, and 94 controls without malformations, paired with MMC infants by gender, mode of delivery, gestational age and time of birth. Infants were born at a university hospital in São Paulo, Brazil, from 2001 to 2010. After adjusting for perinatal variables (prenatal care, maternal hypertension, birth during the day shift, cephalic presentation, meconium in the amniotic fluid, gestational age <37 weeks and small-for-gestational-age infants), MMC increased the chance of positive pressure ventilation at birth [odds ratio (OR) 4.55 95% confidence interval (CI) 1.82-11.41], intubation at birth (OR 3.94 95% CI 1.14-13.59) and 1-min Apgar score 95% CI 0.99-7.57). CONCLUSION: MMC is an independent factor associated with the need for positive pressure ventilation and intubation at birth.
Assuntos
Intubação Intratraqueal/estatística & dados numéricos , Meningomielocele/terapia , Respiração com Pressão Positiva/estatística & dados numéricos , Ressuscitação/estatística & dados numéricos , Índice de Apgar , Brasil , Estudos de Casos e Controles , Parto Obstétrico/métodos , Parto Obstétrico/estatística & dados numéricos , Feminino , Humanos , Recém-Nascido , Modelos Logísticos , Masculino , Ressuscitação/métodos , Estudos Retrospectivos , Fatores de RiscoAssuntos
Humanos , Masculino , Criança , Adolescente , Escoliose/cirurgia , Escoliose/complicações , Meningomielocele/cirurgia , Meningomielocele/complicações , Meningomielocele/diagnóstico , Meningomielocele/terapia , Equipe de Assistência ao Paciente , Cuidados Pós-Operatórios , Cuidados Pré-Operatórios , ArgentinaRESUMO
Introdução: A mielomeningocele (MMC) é uma das formas de disrafismo que resulta do defeito de fechamento da porção posterior dotubo neural, durante a quarta semana de gestação. Objetivos: Traçar o perfil epidemiológico dos recém-nascidos portadores de (MMC) no IFF/FIOCRUZ, encaminhados ao setor de Fisioterapia Motora. Material e Métodos: Estudo transversal, descritivo, institucional, noqual foram analisados prontuários de pacientes portadores de (MMC), entre janeiro de 2007 e junho de 2008. Resultados e Discussão: Houve predomínio do sexo masculino. Em 14 criancas detectou-se a presença de hidrocefalia. Quatro crianças apresentaram outras malformaçõesdo sistema nervoso, como disgenesias do corpo caloso. A maioria dos pacientes apresentou alterações ortopédicas, sendo a mais freqüente o pétorto congênito. Os maiores problemas estão relacionados com a possibilidade de levantar, deambular e controlar voluntariamente os sistemasvesical e intestinal. Conclusão: O tratamento de crianças com mielomeningocele requer intervenção clínica e cirúrgica precoces, além detratamento reabilitativo.
Introduction: Myelomeningocele (MMC) is one of the forms of dysraphism that results from a defect in the closure of the posterior portion/section of the neural tube, during the fourth week of gestation. MMC affects the nervous, musculoskeletal and urogenital systems. Objectives: To map the epidemiological profile of the newborn with MMC in the IFF/FIOCRUZ, sent to the Physical Therapy service. Material and Methods: A transversal, descriptive and institutional study, in which the medical records of patients with MMC from January 2007 to June 2008 have been analyzed. Results and Discussion: There was predominance of the male sex. In 14 children the presence of hydrocephalus was detected. Four children presented other malformations of the nervous system, such as corpus callosum dysgenesis. The majority of the patients showed orthopedic changes, the most frequent of which were congenital foot deformities. The greatest problems were related to the possibility of standing, walking and voluntarily controlling the bladder and bowel systems. Conclusion: The treatment of children with MMC requires early clinical and surgical intervention, as well as rehabilitation treatment.
Assuntos
Humanos , Masculino , Feminino , Recém-Nascido , Anormalidades Congênitas/etiologia , Corpo Caloso/anormalidades , Meningomielocele/epidemiologia , Meningomielocele/fisiopatologia , Meningomielocele/terapia , Disrafismo Espinal , Pé Torto , Brasil , Estudos Transversais , Hidrocefalia/etiologia , Malformações do Sistema NervosoRESUMO
Although Anne had many complex health issues and experienced considerable support from her extended family, she wanted freedom from the restrictions posed by peritoneal dialysis. Her quality of life changed after transplantation, with more opportunities to engage in leisure activities, ability to travel, a less restricted diet, and an improved self-image. She required fewer treatments, surgeries, and hospitalizations. She left behind the role of sick child and took up a role more like a healthy child. During the disease and decision-making process, Anne learned coping mechanisms, allowing her to gain autonomy to make decisions. The case study illustrates both the need to listen to children as well as to care for the entire family. The nursing management of this child and her family was continually changing, and multiple strategies were used to support the family. The nurse came to understand the roles of family members in constant change, the sources of their resources, and foci of tensions. Based on this knowledge, the nurse can act by mobilizing resources, strengthening the confidence of family members, and helping them develop coping mechanisms. In conclusion, care of the ill child must be family-centered. Stresses on the family have an impact on the child and vice versa. The potential to influence the quality of life of both the child and the family is considerable.
Assuntos
Anormalidades Múltiplas/psicologia , Tomada de Decisões , Família/psicologia , Transplante de Fígado/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Diálise Peritoneal/psicologia , Anormalidades Múltiplas/terapia , Ossos do Carpo/anormalidades , Criança , Feminino , Comunicação Interatrial/psicologia , Comunicação Interatrial/terapia , Humanos , Meningomielocele/psicologia , Meningomielocele/terapia , Qualidade de Vida/psicologiaRESUMO
A mielomeningocele (MMC) é um defeito de fechamento do tubo neural, caracterizado pela falha na fusão dos arcos vertebrais, displasia medular e distensão cística das meninges, que contêm tecido nervoso em seu interior. O defeito acontece entre a terceira e quinta semana de vida intra-uterina e nem sempre é diagnosticada durante a gravidez, sendo responsável por 85 por cento dos casos de defeito do tubo neural (DFTN). A manifestação clínica mais óbvia da mielomeningocele (MMC) é a perda das funções sensoriais e motoras nos membros inferiores. O presente estudo demonstrou os resultados da fisioterapia em uma criança com MMC através da funcionalidade e da independência nas atividades de vida diária (AVDs), por meio de aquisições da capacidade de engatinhar e deambular com auxílio.
The myelomeningocele (MMC) is a failure on the neural tube closing, characterized by the flaw in the fusion of vertebral arches, medullary dysplasia and cystic distention of the meninges which contain nervous tissue in their interior. The defect occurs between the third and fifth week of intra-uterine life and not always is diagnosed during pregnancy. It is responsible for 85 percent of neural tube defect cases. The most obvious myelomeningocele clinical manifestations are: loss of sensory and motor functions of the lower limbs. The present study showed the results of physical therapy in a child with MMC through functionality and independence on daily life activities through acquisitions of the capacity of crawling and walking with assistance.