The implausibility of ‘usual care’ in an open system: sedation and weaning practices in Paediatric Intensive Care Units (PICUs) in the United Kingdom (UK)

Background: The power of the randomised controlled trial depends upon its capacity to operate in a closed system whereby the intervention is the only causal force acting upon the experimental group and absent in the control group, permitting a valid assessment of intervention efficacy. Conversely, clinical arenas are open systems where factors relating to context, resources, interpretation and actions of individuals will affect implementation and effectiveness of interventions. Consequently, the comparator (usual care) can be difficult to define and variable in multi-centre trials. Hence outcomes cannot be understood without considering usual care and factors that may affect implementation and impact on the intervention. Methods: Using a fieldwork approach, we describe PICU context, ‘usual’ practice in sedation and weaning from mechanical ventilation, and factors affecting implementation prior to designing a trial involving a sedation and ventilation weaning intervention. We collected data from 23 UK PICUs between June and November 2014 using observation, individual and multi-disciplinary group interviews with staff. Results: Pain and sedation practices were broadly similar in terms of drug usage and assessment tools. Sedation protocols linking assessment to appropriate titration of sedatives and sedation holds were rarely used (9 % and 4 % of PICUs respectively). Ventilator weaning was primarily a medical-led process with 39 % of PICUs engaging senior nurses in the process: weaning protocols were rarely used (9 % of PICUs). Weaning methods were variably based on clinician preference. No formal criteria or use of spontaneous breathing trials were used to test weaning readiness. Seventeen PICUs (74 %) had prior engagement in multi-centre trials, but limited research nurse availability. Barriers to previous trial implementation were intervention complexity, lack of belief in the evidence and inadequate training. Facilitating factors were senior staff buy-in and dedicated research nurse provision. Conclusions: We examined and identified contextual and organisational factors that may impact on the implementation of our intervention. We found usual practice relating to sedation, analgesia and ventilator weaning broadly similar, yet distinctively different from our proposed intervention, providing assurance in our ability to evaluate intervention effects. The data will enable us to develop an implementation plan; considering these factors we can more fully understand their impact on study outcomes

Reliability of two behavioral tools to assess pain in preterm neonates

CONTEXT: One of the main difficulties in adequately treating the pain of neonatal patients is the scarcity of validated pain evaluation methods for this population. OBJECTIVE: To analyze the reliability of two behavioral pain scales in neonates. TYPE OF STUDY: Cross-sectional. SETTING: University hospital neonatal intensive care unit. PARTICIPANTS: 22 preterm neonates were studied, with gestational age of 34 ± 2 weeks, birth weight of 1804 ± 584 g, 68% female, 30 ± 12 hours of life, and 30% intubated. PROCEDURES: Two neonatologists (A and B) observed the patients at the bedside and on video films for 10 minutes. The Neonatal Facial Coding System and the Clinical Scoring System were scored at 1, 5, and 10 minutes. The final score was the median of the three values for each observer and scale. A and B were blinded to each other. Video assessments were made three months after bedside evaluations. MAIN MEASUREMENTS: End scores were compared between the observers using the intraclass correlation coefficient and bias analysis (paired t test and signal test). RESULTS: For the Neonatal Facial Coding System, at the bedside and on video, A and B showed a significant correlation of scores (intraclass correlation score: 0.62), without bias between them (t test and signal test: p > 0.05). For the Clinical Scoring System bedside assessment, A and B showed correlation of scores (intraclass correlation score: 0.55), but bias was also detected between them: A scored on average two points higher than B (paired t test and signal test: p 0,05). Para a Escala de Conforto Clínico à beira do leito, os escores obtidos por A e B mostraram uma correlação significante (0,55), foi detectado: o escore obtido por A foi, em média, dois pontos superior ao de B (teste t e do sinal: p < 0,05). Para a mesma escala aplicada em vídeo, os escores obtidos por A e B não mostraram correlação (0,25) e detectou-se viés (teste t e do sinal: p < 0,05). CONCLUSÃO: Os resultados reforçam a confiabilidade do Sistema de Codificação da Atividade Facial Neonatal aplicado à beira do leito para a avaliação da dor no recém-nascido pré-termo.Universidade Federal de São Paulo (UNIFESP) Escola Paulista de MedicinaUniversidade Federal de São Paulo (UNIFESP) Escola Paulista de Medicina Neonatal DivisionUniversidade Federal de São Paulo (UNIFESP) Escola Paulista de Medicina Department of EpidemiologyUNIFESP, EPM, Neonatal DivisionUNIFESP, EPM, Department of EpidemiologySciEL

Pompe disease diagnosis and management guideline

ACMG standards and guidelines are designed primarily as an educational resource for physicians and other health care providers to help them provide quality medical genetic services. Adherence to these standards and guidelines does not necessarily ensure a successful medical outcome. These standards and guidelines should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. in determining the propriety of any specific procedure or test, the geneticist should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient or specimen. It may be prudent, however, to document in the patient's record the rationale for any significant deviation from these standards and guidelines.Duke Univ, Med Ctr, Durham, NC 27706 USAOregon Hlth Sci Univ, Portland, OR 97201 USANYU, Sch Med, New York, NY USAUniv Florida, Coll Med, Powell Gene Therapy Ctr, Gainesville, FL 32611 USAIndiana Univ, Bloomington, in 47405 USAUniv Miami, Miller Sch Med, Coral Gables, FL 33124 USAHarvard Univ, Childrens Hosp, Sch Med, Cambridge, MA 02138 USAUniversidade Federal de São Paulo, São Paulo, BrazilColumbia Univ, New York, NY 10027 USANYU, Bellevue Hosp, Sch Med, New York, NY USAColumbia Univ, Med Ctr, New York, NY 10027 USAUniversidade Federal de São Paulo, São Paulo, BrazilWeb of Scienc

Reversal of Neurological Deficit with Naloxone: An Additional Report

We report the repeated improvement in neurological function following naloxone administration in a patient who developed acute hemiplegia after an intracranial neurological procedure. The mechanisms responsible for the neurological deficit and for its reversal by naloxone are discussed. A review of the literature suggests that the beneficial effect of naloxone can result from an improvement in haemodynamic status or from metabolic effects that could be favorable during cerebral ischaemia

Nurses' knowledge and practices regarding pain management in newborns

OBJETIVO Verificar el conocimiento y las prácticas de los enfermeros sobre el manejo del dolor de recién nacidos admitidos en Unidades de Tratamiento Intensivo Neonatal. MÉTODO Estudio descriptivo y transversal. Los datos fueron recolectados con 51 enfermeros, mediante un cuestionario adaptado que tiene el fin de evaluar el conocimiento y las prácticas acerca del manejo del dolor neonatal, en seis hospitales de Curitiba y Región Metropolitana. RESULTADOS Para la mayoría de los enfermeros (86,0%), los neonatos sienten dolor. Un total del 34,7% afirmaron nunca utilizar escalas de evaluación del dolor. El registro del manejo del dolor fue realizado por el 84,3% de los enfermeros. Las medidas farmacológicas realizadas fueron Paracetamol y Fentanilo (47,1%) y Morfina (17,6%); las no farmacológicas adoptadas fueron solución azucarada (68,6%), succión no nutritiva (58,8%) y posicionamiento (56,9%). CONCLUSIÓN Los enfermeros consideraron el dolor neonatal como un evento real; sin embargo, no realizaban evaluación o tratamiento del dolor en el recién nacido de modo sistematizado. Es necesario implantar estrategias de traducción del conocimiento a fin de perfeccionar el manejo del dolor de recién nacidos.OBJETIVO Verificar o conhecimento e as práticasdos enfermeiros sobreo manejo da dor de recém-nascidos admitidos em Unidades de Tratamento Intensivo Neonatal. MÉTODO Estudo descritivo e transversal. Os dados foram coletados com 51 enfermeiros, a partir de um questionário adaptado que visa avaliar o conhecimento e as práticas sobre o manejo da dor neonatal, em seis hospitais de Curitiba e Região Metropolitana. RESULTADOS Para a maioria dos enfermeiros(86,0%), os neonatos sentem dor. Um total de 34,7% afirmaramnunca utilizar escalas de avaliaçãoda dor. O registro do manejo da dor foi realizado por 84,3% dos enfermeiros. As medidas farmacológicas realizadas foram Paracetamol e Fentanil (47,1%) e Morfina (17,6%);as não farmacológicas adotadas foram solução adocicada (68,6%), sucção não nutritiva (58,8%) e posicionamento (56,9%). CONCLUSÃO Os enfermeiros consideraram a dor neonatal como um evento real, porém não realizavam avaliação ou tratamento da dor no recém-nascido de modosistematizado. É necessário implementarestratégias de tradução do conhecimento paraaprimorar o manejo da dor de recém-nascidos.OBJECTIVE To analyze nurses' knowledge and practices regarding pain management of newborns admitted to Neonatal Intensive Care Units. METHOD A descriptive and cross-sectional study. Data were collected from 51 nurses based on an adapted questionnaire aimed at evaluating knowledge and practices regarding the management of neonatal pain in six hospitals in Curitiba and its Metropolitan Region. RESULTS For most nurses (86.0%), neonates feel pain. A total of 34.7% of the nurses reported never using pain assessment scales. Pain management was recorded by 84.3% of the nurses. Administered pharmacological measures were Paracetamol and Fentanyl (47.1%) and Morphine (17.6%); while non-pharmacological measures adopted were sweetened solution (68.6%), non-nutritive sucking (58.8%) and positioning (56.9%). CONCLUSION Nurses considered neonatal pain a real event; however, they do not perform pain assessment or treatment of newborns in a systematized way.It is necessary to implement knowledge translation strategiesin order to improve pain management in newborns