Intravenous Golimumab in Children With Polyarticular-Course Juvenile Idiopathic Arthritis: Long-Term Extension of an Open-Label, Phase III Study.

OBJECTIVE: To report pharmacokinetics (PK), immunogenicity, clinical effect, and safety of intravenous (IV) golimumab in children with active polyarticular-course juvenile idiopathic arthritis (pcJIA) who participated in A Study to Evaluate the Pharmacokinetics, Efficacy and Safety of Intravenous Golimumab in Pediatric Participants With Active Polyarticular Course Juvenile Idiopathic Arthritis Despite Methotrexate Therapy (GO-VIVA)'s open-label, long-term extension (LTE) through week 252. METHODS: GO-VIVA participants who continued IV golimumab (80 mg/m2 every 8 weeks) after week 52 were included. PK and safety were assessed through week 244 (last dose) and week 252, respectively, and clinical response through week 116. Clinical outcomes included JIA-American College of Rheumatology (ACR) responses and clinical Juvenile Arthritis Disease Activity Score in 10 joints (cJADAS10). Binary outcomes used nonresponder imputation, and other descriptive analyses used observed data. RESULTS: Of 112/127 (88.2%) participants entering the LTE, 69 completed the week 252 visit. Median steady-state trough golimumab concentrations were generally maintained from week 52 through week 244 (range 0.3-0.6 µg/mL). Antigolimumab antibody rates were consistent through week 52 (39.2% [49/125]) and week 244 (44.8% [56/125]). Week 52 JIA-ACR 30/50/70/90 response rates (75.6% [96/127], 74% [94/127], 65.4% [83/127], and 48.8% [62/127], respectively) were generally maintained through week 116 (72.4% [92/127], 71.7% [91/127], 63.8% [81/127], and 50.4% [64/127], respectively), when the median cJADAS10 was 1.6 and 56.7% (72/127) of participants achieved cJADAS10 ≤ 5 (minimal disease activity). Rates (per 100 patient-years) of serious adverse events and serious infections through week 252 were 7.7 and 3.9, respectively. CONCLUSION: GO-VIVA LTE participants experienced adequate PK exposure and stable safety and immunogenicity. The majority of participants experienced no more than minimal residual disease activity. Data suggest IV golimumab treatment provided durable clinical response through week 116, with an acceptable risk-benefit profile.

Defining documentation burden (DocBurden) and excess DocBurden for all health professionals: A scoping review.

OBJECTIVE: Efforts to reduce documentation burden (DocBurden) for all health professionals (HP) are aligned with national initiatives to improve clinician wellness and patient safety. Yet DocBurden has not been precisely defined, limiting national conversations and rigorous, reproducible, and meaningful measures. Increasing attention to DocBurden motivated this work to establish a standard definition of DocBurden, with the emergence of excessive DocBurden as a term. METHODS: We conducted a scoping review of DocBurden definitions and descriptions, searching six databases for scholarly, peer-reviewed, and gray literature sources, using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extensions for Scoping Review (PRISMA-ScR) guidance. For the concept clarification phase of work, we used the American Nursing Informatics Association (ANIA)'s 6-Domains of Burden Framework. RESULTS: A total of 153 articles were included based on a priori criteria. Most articles described a focus on DocBurden, but only 18% (n=28) provided a definition. We define excessive DocBurden as the stress and unnecessarily heavy work a HP or healthcare team experiences when usability of documentation systems and documentation activities (i.e., generation, review, analysis and synthesis of patient data) are not aligned in support of care delivery. A negative connotation was attached to burden without a neutral state in included sources, which does not align with dictionary definitions of burden. CONCLUSIONS: Existing literature does not distinguish between a baseline or required task load to conduct patient care resulting from usability issues(DocBurden), and the unnecessarily heavy tasks and requirements that contribute to excessive DocBurden. Our definition of excessive DocBurden explicitly acknowledges this distinction, to support development of meaningful measures for understanding and intervening on excessive DocBurden locally, nationally and internationally.

Sensory-Motor-Oral Stimulation Combined with Early Sucking During the Mandibular Distraction Osteogenesis Process in Children with Robin Sequence.

OBJECTIVE: To describe the findings of children with Robin Sequence (RS) who received sensory-motor-oral stimulation combined with early sucking during mandibular distraction osteogenesis (MDO), compared with children who did not receive the intervention. DESIGN: A quasi-experimental study. Setting: A tertiary public hospital. Patients: Children with RS referred to MDO. A historical group from the same population but managed according to the institution's standard protocol (no sucking) served as a control group. Interventions: Sensory-motor-oral stimulation, including sucking, starting 24 h after MDO (intervention group). Main Outcome Measure: Our hypothesis is that sensory-motor-oral stimulation, including sucking during the DOM process, do not negatively affect surgical outcomes. RESULTS: Twenty-nine children were included. Eight (72.7%) of the 11 patients in the intervention group and 13 (72.2%) of the 18 controls had MDO complications, with no significant difference between the groups (p = 1.000). The most common surgical outcome was antibiotic therapy for surgical site infection (76.2%). Six months after MDO, 22 (75.9%) children attained full oral feeding or associated with alternative feeding methods. CONCLUSION: The intervention group did not have higher complication rates, from a surgical point of view, than control group. The protocol adopted by some centers that contraindicates sucking during MDO should be revised to consider the benefits of such stimulation. Keywords: Pierre Robin Syndrome, deglutition, therapeutics, child development.

Four dimensions of naturalistic language production in aphasia after stroke.

There is a rich tradition of research on the neuroanatomical correlates of spoken language production in aphasia using constrained tasks (e.g., picture naming), which offer controlled insights into the distinct processes that govern speech and language (i.e., lexical-semantic access, morphosyntactic construction, phonological encoding, speech motor programming/execution). Yet these tasks do not necessarily reflect everyday language use. In contrast, naturalistic language production (also referred to as connected speech or discourse) more closely approximates typical processing demands, requiring the dynamic integration of all aspects of speech and language. The brain bases of naturalistic language production remain relatively unknown, however, in part because of the difficulty in deriving features that are salient, quantifiable, and interpretable relative to both speech-language processes and the extant literature. The present cross-sectional observational study seeks to address these challenges by leveraging a validated and comprehensive auditory-perceptual measurement system that yields four explanatory dimensions of performance-Paraphasia (misselection of words and sounds), Logopenia (paucity of words), Agrammatism (grammatical omissions), and Motor speech (impaired speech motor programming/execution). We used this system to characterize naturalistic language production in a large and representative sample of individuals with acute post-stroke aphasia (n = 118). Scores on each of the four dimensions were correlated with lesion metrics, and multivariate associations among the dimensions and brain regions were then explored. Our findings revealed distinct yet overlapping neuroanatomical correlates throughout the left-hemisphere language network. Paraphasia and Logopenia were associated primarily with posterior regions, spanning both dorsal and ventral streams, which are critical for lexical-semantic access and phonological encoding. In contrast, Agrammatism and Motor speech were associated primarily with anterior regions of the dorsal stream that are involved in morphosyntactic construction and speech motor planning/execution respectively. Collectively, we view these results as constituting a brain-behavior model of naturalistic language production in aphasia, aligning with both historical and contemporary accounts of the neurobiology of spoken language production.

Evaluation of depressive and anxiety symptoms in childhood-onset systemic lupus erythematosus: Frequency, course, and associated risk factors.

BACKGROUND: Depressive and anxiety symptoms are common in childhood-onset systemic lupus erythematosus (cSLE), yet their etiology and course remain unclear. We investigated the frequency of depressive and anxiety symptoms longitudinally in youth with cSLE, and associated socio-demographic and disease factors. METHODS: Participants 8-18 years with cSLE completed baseline measures [demographic questionnaire, Center for Epidemiologic Studies Depression Scale for Children (CES-DC), Screen for Childhood Anxiety Related Disorders (SCARED), and psychiatric interview] and follow-up measures (CES-DC and SCARED) > 6 months later. Prevalence of clinically significant depressive (score >15 on CES-DC) or anxiety symptoms (score ≥25 on SCARED) was calculated at baseline and follow-up. Baseline psychiatric interview diagnoses were tabulated. Relationships between socio-demographics (neighborhood-level material deprivation, ethnic concentration, adverse childhood event history, psychiatric condition in a first-degree relative), disease-related factors (disease duration, major organ disease, disease activity, glucocorticoid use, comorbid medical condition) and baseline depressive and anxiety scores, were examined in linear regression models. Factors with univariate associations with p < 0.2 were included in multivariable adjusted models. RESULTS: At baseline, of 51 participants with a mean disease duration of 4.3 years (SD 2.7), 35% (n = 18) and 35% (n = 18) had clinically significant depressive and anxiety symptoms, respectively. Anxiety disorder was diagnosed by psychiatric interview in 14% (n = 7), depressive disorders in 6% (n = 3), and post-traumatic stress disorder in 4% (n = 2). Adverse childhood events and first-degree relative with psychiatric condition were present in 40% (n = 20) and 37% (n = 18), respectively. In multivariable regression analysis, baseline depressive symptoms were positively correlated with neighbourhood-level material deprivation (ß = 4.2, 95% CI [1.0, 7.3], p = 0.01) and psychiatric condition in a first-degree relative (ß = 7.3, 95% CI [2.2, 12.4], p = 0.006). No associations were found between baseline anxiety scores and patient factors. At a median follow-up of 13.5 months (IQR 10.5, 18) for CES-DC (n = 34) and SCARED (n = 44), depressive and anxiety symptoms were persistent (18%, n = 6; 16%, n = 7), and newly present (24%, n = 8; 16% n = 7) at follow-up. CONCLUSION: In this sample, depressive and anxiety symptoms were prevalent and persistent. Depressive symptoms correlated with neighborhood-level material deprivation, and family psychiatric history. These findings support routine psychosocial assessment in cSLE, and provision of appropriate resources.

Clinical outcomes before and after videofluoroscopic swallow study in children 24 months of age or younger.

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.

Global State of the Art and Science of Childhood Dysphagia: Similarities and Disparities in Burden.

Feeding/swallowing and airway protection are complex functions, essential for survival, and continue to evolve throughout the lifetime. Medical and surgical advances across the globe have improved the long-term survival of medically complex children at the cost of increasing comorbidities, including dysfunctional swallowing (dysphagia). Dysphagia is prominent in children with histories of preterm birth, neurologic and neuromuscular diagnoses, developmental delays, and aerodigestive disorders; and is associated with medical, health, and neurodevelopmental problems; and long-term socioeconomic, caregiver, health system, and social burdens. Despite these survival and population trends, data on global prevalence of childhood dysphagia and associated burdens are limited, and practice variations are common. This article reviews current global population and resource-dependent influences on current trends for children with dysphagia, disparities in the availability and access to specialized multidisciplinary care, and potential impacts on burdens. A patient example will illustrate some questions to be considered and decision-making options in relation to age and development, availability and accessibility to resources, as well as diverse cultures and family values. Precise recognition of feeding/swallowing disorders and follow-up intervention are enhanced by awareness and knowledge of global disparities in resources. Initiatives are needed, which address geographic and economic barriers to providing optimal care to children with dysphagia.

Multivariate lesion symptom mapping for predicting trajectories of recovery from aphasia.

Individuals with post-stroke aphasia tend to recover their language to some extent; however, it remains challenging to reliably predict the nature and extent of recovery that will occur in the long term. The aim of this study was to quantitatively predict language outcomes in the first year of recovery from aphasia across multiple domains of language and at multiple timepoints post-stroke. We recruited 217 patients with aphasia following acute left hemisphere ischaemic or haemorrhagic stroke and evaluated their speech and language function using the Quick Aphasia Battery acutely and then acquired longitudinal follow-up data at up to three timepoints post-stroke: 1 month (n = 102), 3 months (n = 98) and 1 year (n = 74). We used support vector regression to predict language outcomes at each timepoint using acute clinical imaging data, demographic variables and initial aphasia severity as input. We found that ∼60% of the variance in long-term (1 year) aphasia severity could be predicted using these models, with detailed information about lesion location importantly contributing to these predictions. Predictions at the 1- and 3-month timepoints were somewhat less accurate based on lesion location alone, but reached comparable accuracy to predictions at the 1-year timepoint when initial aphasia severity was included in the models. Specific subdomains of language besides overall severity were predicted with varying but often similar degrees of accuracy. Our findings demonstrate the feasibility of using support vector regression models with leave-one-out cross-validation to make personalized predictions about long-term recovery from aphasia and provide a valuable neuroanatomical baseline upon which to build future models incorporating information beyond neuroanatomical and demographic predictors.

Situating word deafness within aphasia recovery: A case report.

Word deafness is a rare neurological disorder often observed following bilateral damage to superior temporal cortex and canonically defined as an auditory modality-specific deficit in word comprehension. The extent to which word deafness is dissociable from aphasia remains unclear given its heterogeneous presentation, and some have consequently posited that word deafness instead represents a stage in recovery from aphasia, where auditory and linguistic processing are affected to varying degrees and improve at differing rates. Here, we report a case of an individual (Mr. C) with bilateral temporal lobe lesions whose presentation evolved from a severe aphasia to an atypical form of word deafness, where auditory linguistic processing was impaired at the sentence level and beyond. We first reconstructed in detail Mr. C's stroke recovery through medical record review and supplemental interviewing. Then, using behavioral testing and multimodal neuroimaging, we documented a predominant auditory linguistic deficit in sentence and narrative comprehension-with markedly reduced behavioral performance and absent brain activation in the language network in the spoken modality exclusively. In contrast, Mr. C displayed near-unimpaired behavioral performance and robust brain activations in the language network for the linguistic processing of words, irrespective of modality. We argue that these findings not only support the view of word deafness as a stage in aphasia recovery but also further instantiate the important role of left superior temporal cortex in auditory linguistic processing.

Adolescent Health Care Needs and Relationship to Disease in Patients With Childhood-Onset Systemic Lupus Erythematosus.

OBJECTIVE: Our objective was to characterize adolescent health and psychosocial issues in patients with childhood-onset systemic lupus erythematosus (cSLE) and evaluate demographic and disease characteristics associated with adolescent health. METHODS: We retrospectively examined adolescents aged 12 to 18 years with cSLE seen at the Hospital for Sick Children meeting the American College of Rheumatology/Systemic Lupus International Collaborating Clinics classification criteria, assessed by adolescent medicine in the cSLE clinic between 2018 and 2020. Adolescent health issues were characterized using the Home, Education/Employment, Activities, Diet/Drugs, Sexuality, Suicide/mood (HEADDSS) framework. Issues were classified as presenting and/or identified; adolescent health burden was tabulated as the number of distinct adolescent issues per patient. Multiple Poisson regression models examined associations between patient and disease characteristics (age, sex, material deprivation, disease activity, disease damage, and high-dose glucocorticoid exposure) and adolescent health issues. RESULTS: A total of 108 (60%) of 181 adolescents with cSLE were seen by adolescent medicine, with a median of 2 (interquartile range [IQR] 1-3) visits and a median of 2 (IQR 1-5) adolescent health issues during the study period. Common issues were mood (presenting in 21% vs identified in 50%), sleep (27% vs 2%), school and education (26% vs 1%), and nonadherence (23% vs 8%). Psychoeducation was provided by adolescent medicine to 54% of patients. High-dose glucocorticoids (risk ratio [RR] 1.82, 95% confidence interval [CI] 1.41-2.35, P < 0.001), material deprivation (RR 1.17, 95% CI 1.04-1.30, P = 0.007), and lower SLE Disease Activity Index scores (RR 0.95, 95% CI 0.92-0.98, P = 0.004) were associated with higher adolescent health burden. CONCLUSION: Adolescents with cSLE experience many adolescent issues, especially low mood. High-dose glucocorticoids and social marginalization are associated with greater adolescent health burden. This study highlights the importance of addressing adolescent health needs as part of routine care.

Clinical outcomes before and after videofluoroscopic swallow study in children 24 months of age or younger / Desfechos clínicos antes e depois da videofluoroscopia da deglutição em crianças com 24 meses de idade ou menos

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.

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.

Desfechos de deglutição e alimentação associados à intubação orotraqueal e à traqueostomia em pediatria / Swallowing and feeding outcomes associated with orotracheal intubation and tracheostomy in pediatrics

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.

Evaluation of Swallowing in Infants with Congenital Heart Defect

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. .

Avaliação da deglutição em lactentes com cardiopatia congênita e síndrome de Down: estudo de casos / Swallowing evaluation in infants with congenital heart disease and Down syndrome : clinical study cases

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.

Development of a smartphone app for adolescents with lupus: a collaborative meeting-based methodology inclusive of a wide range of stakeholders / Desarrollo de una aplicación para teléfonos móviles inteligentes dirigida a los adolescentes con lupus: un método colaborativo basado en reuniones con una amplia gama de interesados directos

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).

Cryostimulation improves recovery from oropharyngeal dysphagia after stroke

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...

Alterações miofuncionais em adultos e idosos usuários de prótese dentária / Changes myofunctional in adults and elderly users dental prosthesis

Objective: To describe the myofunctional oral aspects of adults and elders users of dental prosthesis. Materials and methods: The subjects were divided into six groups according to the type of dental prosthesis. The instruments for data collection were an interview with sociodemographic data and clinical speech pathology assessment through the Miofunctional Oral Assessment protocol. Results: 41 prosthesis users participated. Regarding the changes in the stomatognathic system, it was perceived the cut of food changed in 42% of users and 20% of non users. With relation to type of mastication, it was found unilateral mastication in 41% of dental prosthesis users and for 36,36% of non users of dental prosthesis. The swallowing changed was found in 70% of prosthesis users and 66.6% of non-users. Only the five group composed by users of upper and lower prosthesis presented a mastication time of 9 sec. greater than that found in the literature and the other study groups. Among prosthesis users 17.07% had abnormal speech and among non users nobody had abnormal speech. Conclusion: there are structural and functional modifications of the stomatognathic system arising from the use of removable prosthesis, which demonstrates the importance of interdisciplinary work between speech therapy and dentistry in the adaptation of dental prosthesis, allowing faster adaptation and effectively, minimizing the losses of stomatognathic functions and quality of life.

Objetivo: Descrever os aspectos miofuncionais orais dos indivíduos adultos e idosos usuários de próteses dentárias. Materiais e métodos: Os sujeitos foram divididos em seis grupos de acordo com o tipo de prótese dentária. Os instrumentos para a coleta dos dados foram anamnese com dados sociodemográficos e avaliação fonoaudiológica através do protocolo de Avaliação Miofuncional Oral. Resultados: Participaram 41 usuários de prótese dentária. Com relação às alterações do sistema estomatognático foi percebido corte do alimento alterado em 42% dos usuários e em 20% dos não usuários de prótese. Quanto ao tipo de mastigação encontramos mastigação unilateral em 41% dos usuários de prótese dentária e em 36,36% dos não usuários de prótese dentária. A alteração de deglutição foi encontrada em 70% dos usuários de prótese dentária e em 66,6% dos não usuários. Apenas o grupo cinco composto por usuários de prótese superior e inferior apresentou um tempo mastigatório de 9 seg. maior do que o encontrado na literatura e do que os demais grupos do estudo. Dentre os usuários de prótese dentária 17,07% apresentaram alteração de fala e dentre os não usuários de prótese dentária ninguém apresentou alteração de fala. Conclusão: existem modificações estruturais e funcionais do sistema estomatognático decorrentes do uso da prótese dentária removível, o que demonstra a importância de um trabalho interdisciplinar entre a fonoaudiologia e a odontologia na adaptação das próteses dentárias, propiciando uma adaptação mais rápida e eficaz, minimizando os prejuízos das funções estomatognáticas e da qualidade de vida.