ABSTRACT Objective: To evaluate the combined impact of videofluoroscopic swallow study (VFSS) and therapeutic feeding and swallowing interventions on clinical outcomes in children with oropharyngeal dysphagia (OPD). Methods: This was an uncontrolled longitudinal analytical study in which OPD patients were evaluated before and after VFSS. Children ≤ 24 months of age diagnosed with OPD in a clinical setting and undergoing VFSS for investigation and management of OPD were included in the study. The study participants received therapeutic feeding and swallowing interventions after having undergone VFSS, being followed at an outpatient clinic for pediatric dysphagia in order to monitor feeding and swallowing difficulties. Respiratory and feeding outcomes were compared before and after VFSS. Results: Penetration/aspiration events were observed in 61% of the VFSSs (n = 72), and therapeutic feeding and swallowing interventions were recommended for 97% of the study participants. After the VFSS, there was a reduction in the odds of receiving antibiotic therapy (OR = 0.007) and in the duration of antibiotic therapy (p = 0.014), as well as in the odds of being admitted to hospital (p = 0.024) and in the length of hospital stay (p = 0.025). A combination of oral and enteral feeding became more common than oral or enteral feeding alone (p = 0.002). Conclusions: A high proportion of participants exhibited penetration/aspiration on VFSS. Therapeutic feeding and swallowing interventions following a VFSS appear to be associated with reduced respiratory morbidity in this population. Objective (VFSS OPD. . (OPD) Methods 2 difficulties Results Penetrationaspiration Penetration aspiration 61 n 72, 72 , 72) 97 OR 0.007 0007 0 007 p 0.014, 0014 0.014 014 0.014) 0.024 0024 024 0.025. 0025 0.025 025 0.025) 0.002. 0002 0.002 002 0.002) Conclusions penetrationaspiration penetration population (OPD 6 7 9 0.00 000 00 001 0.01 01 0.02 02 0.0 0.

RESUMO Objetivo: Avaliar o impacto conjunto da videofluoroscopia da deglutição (VFD) e intervenções terapêuticas de alimentação e deglutição nos desfechos clínicos em crianças com disfagia orofaríngea (DOF). Métodos: Trata-se de um estudo analítico longitudinal não controlado em que pacientes com DOF foram avaliados antes e depois da VFD. Foram incluídas no estudo crianças com idade ≤ 24 meses e diagnóstico clínico de DOF, submetidas à VFD para a investigação e manejo da DOF. Os participantes do estudo receberam intervenções terapêuticas de alimentação e deglutição após terem sido submetidos à VFD, sendo então acompanhados em um ambulatório de disfagia pediátrica para o monitoramento das dificuldades de alimentação e deglutição. Os desfechos respiratórios e alimentares foram comparados antes e depois da VFD. Resultados: Eventos de penetração/aspiração foram observados em 61% das VFD (n = 72), e intervenções terapêuticas de alimentação e deglutição foram recomendadas a 97% dos participantes do estudo. Após a VFD, houve uma redução das chances de receber antibioticoterapia (OR = 0,007) e da duração da antibioticoterapia (p = 0,014), bem como das chances de internação hospitalar (p = 0,024) e do tempo de internação (p = 0,025). A alimentação por via oral e enteral em conjunto tornou-se mais comum do que a alimentação exclusivamente por via oral ou enteral (p = 0,002). Conclusões: Houve alta proporção de crianças que apresentaram penetração/aspiração na VFD. As intervenções terapêuticas de alimentação e deglutição após a VFD parecem estar associadas à redução da morbidade respiratória nessa população. Objetivo (VFD . (DOF) Métodos Tratase Trata se 2 Resultados penetraçãoaspiração penetração aspiração 61 n 72, 72 , 72) 97 OR 0,007 0007 0 007 p 0,014, 0014 0,014 014 0,014) 0,024 0024 024 0,025. 0025 0,025 025 0,025) tornouse tornou 0,002. 0002 0,002 002 0,002) Conclusões população (DOF 6 7 9 0,00 000 00 001 0,01 01 0,02 02 0,0 0,

“What's in a name? That which we call a rose / By any other name would smell as sweet” (Juliet, from Romeo and Juliet by William Shakespeare). Shakespeare's implication is that a name is nothing but a word and it therefore represents a convention with no intrinsic meaning. Whilst this may be relevant to romantic literature, disease names do have real meanings, and consequences, in medicine. Hence, there must be a very good rational for changing the name of a disease that has a centuries-old historical context. A working group of representatives from national and international endocrinology and endocrine pediatric societies now proposes changing the name of “diabetes insipidus” to “Arginine Vasopressin Deficiency (AVP-D)” for central etiologies, and “Arginine Vasopressin Resistance (AVP-R)” for nephrogenic etiologies This editorial provides both the historical context and the rational for this proposed name change.

RESUMO Objetivo verificar os desfechos de deglutição e alimentação de pacientes pediátricos submetidos à intubação orotraqueal (IOT) prolongada, considerando aqueles que evoluíram para traqueostomia após. Métodos estudo de coorte retrospectivo, realizado por meio da análise de prontuários de pacientes admitidos em Unidade de Terapia Intensiva Pediátrica e acompanhados até a alta hospitalar, entre março de 2017 e dezembro de 2018. Resultados dos 51 pacientes incluídos, 64,7% eram do gênero masculino e a mediana de idade foi de 6,7 meses. Pacientes submetidos à IOT por mediana de sete dias apresentaram disfagia orofaríngea (DOF) leve e, quando submetidos a mais de 14 dias, apresentaram DOF moderada/grave, distúrbio alimentar pediátrico (DAP) com características de recusa alimentar e contraindicação de alimentação por via oral na alta hospitalar. Dentre os pacientes, 74,5% foram submetidos apenas à IOT e 25,5% evoluíram para traqueostomia, após. Pacientes traqueostomizados apresentaram maior ocorrência de alta hospitalar com DOF moderada/grave, DAP com características de recusa alimentar e uso de via alternativa de alimentação, em comparação a pacientes sem traqueostomia (p=0,001). Comparado ao diagnóstico inicial, pacientes não traqueostomizados tiveram diagnóstico final com graus mais leves de disfagia (p<0,001). Conclusão o tempo de IOT e a presença de traqueostomia são fatores associados ao diagnóstico fonoaudiológico de DOF moderada/grave, à presença de sinais de DAP com características de recusa alimentar e à necessidade de via alternativa de alimentação, persistentes até a alta hospitalar, sendo achados fonoaudiológicos frequentes entre os desfechos de deglutição/alimentação em pediatria.

ABSTRACT Purpose To verify the swallowing and feeding outcomes of pediatric patients undergoing prolonged OTI, considering those who progressed to tracheostomy afterward. Methods Retrospective cohort study, carried out by analyzing the medical records of patients admitted to the Pediatric ICU and followed up until hospital discharge, between 03/2017 and 12/2018. Results Of the 51 patients included, 64.7% were male and the median age 6.7 months. Patients undergoing OTI for a median of 7 days had mild dysphagia and when submitted for more than 14 days had moderate/severe dysphagia and PFD with characteristics of food refusal, with contraindication to oral feeding at hospital discharge. 74.5% of the patients underwent OTI only and 25.5% progressed to tracheostomy afterward. Tracheostomized patients had a higher occurrence of hospital discharge with moderate/ severe oropharyngeal dysphagia, pediatric feeding disorder (PFD) with characteristics of food refusal and alternative method of feeding compared to patients without tracheostomy (p=0.001). Non-tracheostomized patients had a final diagnosis with milder degrees of dysphagia when compared to the initial diagnosis (p<0.001). Conclusion The time of OTI and the presence of tracheostomy are factors associated with the speech-language pathology diagnosis of moderate/severe oropharyngeal dysphagia, presence of signs of PFD with characteristics of food refusal and the need for an alternative method of feeding that persists until hospital discharge, being frequent findings among the swallowing/feeding outcomes in pediatrics.

Introduction Surgical repair of congenital heart disease in the first years of life compromises the coordination of the suction, breathing, and swallowing functions. Objective To describe the alterations in swallowing found in infants with congenital heart defect during their hospitalization. Methods Prospective, cross-sectional study in a reference hospital for heart disease. The sample consisted of 19 postsurgical patients who underwent an evaluation of swallowing. The infants included were younger than 7 months and had a diagnosis of congenital heart defect and suspected swallowing difficulties. Results Of the 19 infants with congenital heart defect, the median age was 3.2 months. A significant association was found between suction rhythm and dysphagia (p = 0.036) and between oral-motor oral feeding readiness and dysphagia (p = 0.014). Conclusions The data suggest that dysphagia often occurs after surgery in infants with congenital heart defect. Infants with congenital heart defect had very similar behavior to preterm infants in terms of oral feeding readiness.

O presente estudo teve por objetivo realizar avaliação fonoaudiológica da deglutição em lactentes com diagnóstico de síndrome de Down e cardiopatia congênita (DSAV tipo A de Rastelli) internados na unidade 2A e Unidade de Tratamento Intensivo Pediátrica da instituição de origem, com suspeita de dificuldade de deglutição, encaminhados ao serviço de fonoaudiologia. Trata-se de uma pesquisa de caráter descritivo-qualitativo, nessa foi possível avaliar dois lactentes durante o período de janeiro a outubro de 2012. Utilizou-se um protocolo de perfil da amostra para a coleta de dados sobre histórico clínico e diagnósticos dos prontuários dos pacientes, além do instrumento de avaliação para prontidão do prematuro para alimentação oral proposto por Fujinaga (2002) para avaliação clínica da deglutição. Os pacientes apresentaram como resultados a presença de disfagia orofaríngea e escores baixos inviabilizando a alimentação exclusivamente por via oral. A conduta terapêutica foi de estimulação oral e volume de alimentação controlado para alimentação oral. Os achados corroboram a literatura no que diz respeito à relação entre disfagia, cardiopatia congênita, síndromes genéticas e alterações miofuncionais orofaciais. Conclui-se que a disfagia apresentou-se como um sintoma dificultante para a alimentação por via oral de forma segura e eficaz para todos os lactentes estudados. Estudos prospectivos com um número maior de sujeitos são necessários para contribuir com a série de casos e, desta forma, identificar outros fatores de risco para disfagia bem como condutas terapêuticas específicas para crianças com síndrome de Down e distúrbios da deglutição associados.

This study had the aim to perform clinical swallowing evaluation in infants diagnosed with Down syndrome and congenital heart disease (complete atrioventricular canal) suspected to have swallowing disorders hospitalized in unit 2A and Pediatric ICU of instituition.It is a descriptive and qualitative study in which was possible to assess two infants during the proposed period. It was used a sample profile protocol to collect data about clinical history and diagnoses from patients records and the Instrumento de avaliação para prontidão do prematuro para alimentação oral by Fujinaga (2002) for clinical swallowing evaluation. The pacients presented results of oropharyngeal dysphagia and low scores invalidating exclusively oral feed. The treatment was oral stimulation and oral feeding volume controlled. The findings contribute to the literature regarding the correlation between dysphagia, congenital heart defects, genetic syndromes and myofunctional disorders. It is concluded that dysphagia was presented as a difficulty symptom to safe and effective oral feed for all infants studied. Prospective larger researches are needed to contribute with this clinical cases study and thus identify other risk factors for dysphagia and specific treatment for children with Down syndrome and swallowing disorders associated.

Traditional challenges of creating a medical app include hearing the voices of various stakeholders as a collective rather than in a consultative process that is sequential. This report describes the development of a mobile (smartphone) app for adolescents with lupus as well as the process that was used to overcome the challenge described above. The development of the smartphone app addressed optimal ways to incorporate information about 1) lupus, including the effects of both the disease and the medications used to treat it; 2) how life choices can affect lupus patients' condition; and 3) ways to increase self-management and communication. The collaborative concept-generating and requirements-gathering methodology was used during a two-day workshop with a range of stakeholders (ages 16 - 59 years) that focused on leveraging user-centered design methods to generate guidance to mobile app developers. The app development process conducted during the workshop included the following steps: 1) recruiting a goal-focused collaborative group, 2) defining app objectives, 3) evaluating potential needs of users, 4) brainstorming app features and use-case modeling, 5) reviewing existing app features and prototypes, 6) refining functionalities, 7) writing user narratives, 8) visualizing navigation and feature design, and 9) identifying content. The use of creative devices such as drawing interfaces fostered fun, engagement, and sustained energy, and the use of a brainstorming technique leveraged methods that ensured an inclusive process so that even participants who were shy, quiet, or easily intimidated by "professionals" felt confident to contribute. In addition to a name change for the app, project outcomes included the selection of the following app features: symptom tracking; appointment and medication reminders; a social media component; a medical summary; easy navigation; informational content; gamification; and personalization (options for customization).

Uno de los desafíos tradicionales durante el desarrollo de una aplicación médica es considerar las opiniones de los diversos interesados directos como colectivo, en lugar de emplear un proceso de consulta de tipo secuencial. En este informe se describe el desarrollo de una aplicación para teléfonos móviles inteligentes dirigida a adolescentes con lupus, así como el procedimiento empleado para superar este tipo de dificultades. En el desarrollo de esta aplicación se buscó la mejor manera de incorporar información acerca de: 1) el lupus, incluidos los efectos tanto de la enfermedad como de los medicamentos utilizados para su tratamiento; 2) cómo las opciones de vida pueden afectar a la situación de los pacientes con lupus; y 3) los procedimientos para aumentar el autotratamiento y la comunicación. En un taller de dos días, en el que participaron diversos interesados directos (de 16 a 59 años de edad), se empleó una metodología colaborativa de generación de conceptos y recopilación de requisitos con el propósito de aprovechar los métodos de diseño centrados en el usuario para que sirvan de guía a los productores de aplicaciones para telefonía móvil. El proceso de desarrollo de la aplicación que se llevó a cabo durante el taller utilizó los siguientes pasos: 1) captar un grupo colaborativo centrado en las metas, 2) definir los objetivos de la aplicación, 3) evaluar las posibles necesidades de los usuarios, 4) hacer una lluvia de ideas sobre las características de la aplicación y elaborar modelos de casos de uso, 5) analizar las características y los prototipos de las aplicaciones existentes, 6) perfeccionar las funcionalidades, 7) redactar distintas experiencias de los usuarios, 8) visualizar el diseño de la navegación y las funcionalidades, y 9) determinar el contenido. El uso de recursos creativos como las interfaces para dibujar fomentó la diversión, la participación y la energía sostenida; y el empleo de una técnica de lluvia de ideas permitió aprovechar algunos métodos que garantizaban un proceso inclusivo, de manera que aun los participantes tímidos, callados o fácilmente intimidables por los "profesionales" se sintieran cómodos para participar. Además del cambio de nombre de la aplicación, otro resultado del proyecto fue que se seleccionaron las siguientes características de la aplicación: seguimiento de síntomas; recordatorio de citas y medicación; un componente de redes sociales; un resumen del historial médico; navegación sencilla; contenido informativo; ludificación; y personalización (opciones de adaptación individualizada).

INTRODUCTION: Stroke is considered one of the most frequent neurological causes of oropharyngeal dysphagia. AIM: To determine the effect of cryostimulation on oropharyngeal sensitivity and, subsequently, on the swallowing reaction and premature escape of food in patients with neurogenic dysphagia after stroke. METHODS: Clinical and experimental study. The study enrolled 7 adult subjects, 6 men and 1 woman ranging from 28 to 64 years of age, with a diagnosis of stroke and current oropharyngeal dysphagia without any other underlying disease. The selected subjects underwent speech-language pathology evaluation and videofluoroscopic assessment of the dysphagia. The subjects were then treated with cryostimulation consisting of 10 applications to each structure (anterior faucial pillar, posterior oropharyngeal wall, soft palate, and back tongue) 3 times a day (for a total of 30 daily applications per structure) for 4 consecutive days. The patients were then re-evaluated based on the same criteria. The pre- and post-cryostimulation results of the clinical and videofluoroscopic evaluations were analyzed descriptively and statistically using Student's t-test and Fisher's exact test. RESULTS: Cryostimulation had beneficial effects on oropharyngeal sensitivity in 6 of the 7 subjects. There was also a significant improvement in swallowing and in the premature escape in six subjects. CONCLUSION: Cryostimulation increased sensitivity and subsequently improved the swallowing reaction and premature escape of food in patients with neurogenic dysphagia after stroke. These effects were evident by both speech-language pathology and videofluoroscopic evaluation.