The impact of the pandemic on physical and functional disabilities in children and adolescents with spina bifida.

STUDY DESIGN: Retrospective and cross-sectional study. OBJECTIVES: The study aimed to carry out telemonitoring to identify the impact of the pandemic on physical and functional disabilities in children and adolescents with SB, as reported by their caregivers, and to investigate adherence to a teleservice. SETTING: Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo (HCFMRP-USP). METHODS: Retrospective and cross-sectional study. Fifty-three patients with SB (mean age 12.0 (4.0) years; 23 males) participated in the telemonitoring. A questionnaire - 'Health management, health conditions, rehabilitation, interest in teleservice, and the well-being of the main caregiver' - investigated the clinical impact of the coronavirus pandemic. Only three caregivers participated in the teleservice (video call). RESULTS: According to telemonitoring, 62% of the patients discontinued physiotherapy sessions, and 69% reported needing adjustments in locomotion devices. The main complaints were muscle weakness and pain. CONCLUSION: We monitored general health and identified demands related to physical rehabilitation using telemonitoring in 42.4% of children and adolescents with SB monitored at the HCFMRP-USP. Telemonitoring and teleservice may be methods used for monitoring health conditions in patients with SB.

Current Trends for Children With Spina Bifida: A Survey of Pediatric Physical Therapists.

PURPOSE: To describe contemporary physical therapy practice and management of children with spina bifida (SB) in the context of the International Classification of Functioning, Disability, and Health (ICF) framework. METHODS: A descriptive, cross-sectional electronic survey was sent to US pediatric physical therapy clinics and posted in the American Physical Therapy Association Pediatrics newsletter. Data were analyzed using content analysis. Codes were compared, refined, and condensed into categories. RESULTS: A total of 163 participants were included. Most assessments evaluated the ICF Activity component. Most frequently reported ICF components: impairments = decreased strength (17.9%), activity limitations = limited walking (22.5%), and participation restrictions = restricted socializing/playing with peers or siblings (22.6%). The most prevalent intervention was strength training. CONCLUSIONS: Physical therapists (PTs) in the United States are performing assessments and interventions supported by available evidence; however, knowledge translation and more research are needed to support best practices in PT management of children with SB.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities.

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.

Programas terapéuticos específicos en niños y jóvenes con parálisis cerebral y lesiones raquimedulares en Teletón Chile 2007-2008: evaluación mediante WeeFIM / Specific therapeutic programs in children and teens with cerebral palsy and spine lesions in Teleton Chile 2007-2008: evaluation through WeeFIM

Introduction: It is important to evaluate the effectiveness of the therapeutic endeavour, in order to improve rehabilitation programs in the motor area in patients with neuromusculoskeletal disabilities. Objective: To evaluate changes in the functional independence between admission and discharge from specific treatments in patients with cerebral palsy and spinal cord lesion, and explore whether gender, age or diagnosis, can predict the progress of children in these types of treatments. Patients and Methods: A single cohort study, consisting of 624 subjects of three years or more with cerebral palsy and 155 with spinal cord injury, attending to specific rehabilitation programs in Teletón Chile Institute from 2007-2008. In the analysis, was used the difference between the admission and discharge WeeFIM score and decision trees with p < 0.05. Results: In 264/624 of the cerebral palsy children (42.3 percent)increase discharge score; 321/624 (51.4 percent) remain the same and 39/624 (6.3 percent) decrease; in spinal cord injury 93/155 patients (60 percent) improve, 58/155 (37.4 percent) do not change and 4/155 (2.6 percent) decrease; the improvement occurs mainly in self-care activities; the decision trees show that specific treatments have best result for diplegia and hemiplegia in children under 6 years; in spinal cord injury, for thoracic bifid spine with hydrocephalus and acquired tetraplegia. Conclusion: Specific treatments have a better outcome for children with cerebral palsy hemiplegia and spine lesions, it is associated with the initial diagnosis; the age acquires predictive characteristics for children with hemiplegia and diplegias under 6 years; WeeFIM is poorly sensitive to detect changes in extreme scores and in short duration rehabilitation programs.

Introducción: Es importante evaluar la efectividad del quehacer terapéutico, con el fin de mejorar los programas de rehabilitación en el área motora de los pacientes con discapacidades neuromusculoesqueléticas. Objetivo: Evaluar cambios en la independencia funcional entre ingreso y alta de tratamientos específicos en pacientes con parálisis cerebral y lesión medular, y explorar si el género, edad y diagnóstico, permiten pronosticar el progreso de los niños en este tipo de tratamientos. Pacientes y Método: Estudio de cohorte única, constituida por 624 sujetos de 3 años o más con parálisis cerebral y 155 con lesión medular, asistentes a programas específicos de rehabilitación de Instituto Teletón Chile en 2007-2008. En el análisis, se usó diferencia de puntaje de WeeFIM entre ingreso y alta, y árboles de decisión con p < 0,05. Resultados: En parálisis cerebral 264/624 (42,3 por ciento) de los niños, aumenta puntaje de alta; 321/624 (51,4 por ciento) permanece igual y 39/624 (6,3 por ciento) desmejora; en lesión medular 93/155 pacientes (60 por ciento) mejora, 58/155 (37,4 por ciento) no cambia y 4/155 (2,6 por ciento) desmejora; la mejoría se produce principalmente en actividades de autocuidado; los árboles de decisión indican que los tratamientos específicos tendrían mejor resultado para diplejías y hemiplejias en menores de 6 años; en lesión medular, para espina bífida torácica con hidrocefalia y tetraplejia. Conclusiones: Los tratamientos específicos tienen mejor resultado para niños con hemiplejia por parálisis cerebral y alteraciones raquimedulares altas; el aumento del puntaje, está asociado al diagnóstico inicial; la edad adquiere carácter predictivo para niños con hemiplejias y diplejías menores de 6 años; WeeFIM es poco sensible para detectar cambios en puntajes extremos y en programas de rehabilitación de corta duración.

Características de crianças com mielomeningocele: implicações para a fisioterapia / Characterisitcs of children with myelomeningocele: implications for physical therapy

Introdução: A mielomeningocele afeta os sistemas: nervoso, músculo-esquelético e genito-urinário, este trabalho tem por objetivo analisar as características de crianças com mielomeningocele atendidas no ambulatório de um Hospital Universitário. Metodologia: O estudo realizado foi retrospectivo, e a coleta de dados baseada nos prontuários de 42 crianças com diagnóstico de mielomeningocele. As variáveis categóricas foram apresentadas por meio de frequência absoluta e relativa. Para a associação foi utilizada a análise univariada por meio do teste do Quiquadrado (com ou sem correção de Yates) ou teste exato de Fisher. Resultados: Houve predomínio do gênero feminino (52,4 por cento) e da raça branca (76,1 por cento), a média de idade foi de 5,1 anos e 38,1 por cento apresentavam lesão no segmento lombar baixo. As complicações mais frequentes foram: hidrocefalia, infecção urinária e deformidades. A associação ocorreu entre luxação do quadril e segmento lombar alto (P=0,015) e fratura e lesão torácica (P=0,001). A desnutrição ocorreu em 15 (35,7 por cento) crianças. Das crianças avaliadas, 35 (83,3 por cento) integravam famílias com renda até três salários mínimos. Todas as crianças haviam sido submetidas às intervenções cirúrgicas, porém 8 (19 por cento) não faziam fisioterapia. Quanto às formas de locomoção, 19 (45,2 por cento) crianças eram indeterminadas, 15 (35,7 por cento) deambuladoras e 8 (19 por cento) cadeirantes. Conclusão: A fisioterapia tem papel fundamental na reabilitação da criança com mielomeningocele, visto que a manifestação clínica, as complicações, as dificuldades enfrentadas pelas suas famílias e as intervenções cirúrgicas necessárias são variadas e complexas.