Infusão endovenosa domiciliar: tecnologias educativas para o cuidado à pessoa com hemofilia / Infusión intravenosa domiciliaria: tecnologías educativas para el cuidado de personas con hemofilia / Home intravenous infusion: educational technologies for the care of people with hemophilia

Resumo Objetivo Elaborar e validar tecnologias educativas para o cuidado domiciliar de pessoas com hemofilia em infusão endovenosa do fator de coagulação. Método Estudo metodológico, desenvolvido em três etapas: elaboração de tecnologias educativas, avaliação de conteúdo e aparência por juízes e apreciação por pessoas com hemofilia. As tecnologias educativas − cartilha e infográfico − foram elaboradas mediante revisão de literatura. Na etapa de avaliação com juízes, foi utilizada a técnica Delphi em duas rodadas, por meio do Índice de Validade de Conteúdo, concordância superior a 0,80 em relação a clareza de linguagem, pertinência prática e relevância teórica. Na avaliação com o público-alvo, foi considerado o nível de concordância de respostas positivas maior ou igual a 80% nos itens de organização, o estilo de escrita, a aparência e a motivação para a leitura. Resultados A cartilha apresentou índice de validade de conteúdo global de 0,88 na primeira rodada e 0,98 na segunda; e o infográfico, 0,88 na primeira rodada e 0,97 na segunda. Na apreciação das tecnologias educativas pelo público-alvo, o nível de concordância das respostas positivas foi superior a 80%. Conclusão Este estudo elaborou tecnologias educativas, cartilha e infográfico, que poderão contribuir com a adesão ao tratamento e promoção do cuidado, por meio de padronização das orientações às pessoas com hemofilia em infusão endovenosa domiciliar.

Resumen Objetivo Elaborar y validar tecnologías educativas para el cuidado domiciliario de personas con hemofilia sobre la infusión intravenosa domiciliaria del factor de coagulación. Métodos Estudio metodológico desarrollado en tres etapas: elaboración de tecnologías educativas, evaluación de contenido y apariencia por jueces y valoración por parte de personas con hemofilia. Las tecnologías educativas (cartilla e infográfico) fueron elaboradas mediate revisión de literatura. En la etapa de evaluación con jueces, se utilizó el método Delphi en dos rondas, por medio del Índice de Validez de Contenido, concordancia superior a 0,80 con relación a la claridad del lenguaje, pertinencia práctica y relevancia teórica. En la evaluación con el público destinatario, se consideró el nivel de concordancia de respuestas positivas mayor o igual a 80 % en los ítems organización, estilo de escritura, apariencia y motivación para lectura. Resultados La cartilla presentó un Índice de Validez de Contenido global de 0,88 en la primera ronda y 0,98 en la segunda. El infográfico presentó 0,88 en la primaria ronda y 0,97 en la segunda. En la valoración de las tecnologías educativas por el público destinatario, el nivel de concordancia de las respuestas positivas fue superior al 80 %. Conclusión En este estudio se elaboraron tecnologías educativas, cartilla e infográfico, que podrán contribuir con la adherencia al tratamiento y promoción del cuidado, mediante la estandarización de las instrucciones a personas con hemofilia sobre infusión intravenosa domiciliaria.

Abstract Objective To develop and validate educational technologies for home care of people with hemophilia on intravenous infusion of clotting factor. Method This is a methodological study, developed in three stages: development of educational technologies, content and appearance assessment by judges, and appraisal by people with hemophilia. The educational technologies - a booklet and an infographic - were developed through a literature review. In the assessment stage with judges, the Delphi technique was used in two rounds, through Content Validity Index, agreement greater than 0.80 in regarding clarity of language, practical relevance, and theoretical relevance. In the assessment with the target audience, the level of agreement of positive responses greater than or equal to 80% in the items of organization, writing style, appearance and motivation for reading was considered. Results The booklet presented a global content validity index of 0.88 in the first round and 0.98 in the second; and the infographic, 0.88 in the first round and 0.97 in the second. In the assessment of educational technologies by the target audience, the level of agreement of positive responses was higher than 80%. Conclusion This study developed educational technologies, a booklet and an infographic, which could contribute to adherence to treatment and promotion of care, by standardizing the guidelines for people with hemophilia in intravenous infusion at home.

Home therapy for inherited bleeding disorders in south Africa: results of a modified delphi consensus process

Background. Optimal care of patients with inherited bleeding disorders requires that bleeding episodes are treated early, or still better prevented, through extension of patient care beyond hospital-based treatment to home-based therapy. In South Africa (SA), adoption of home therapy is variable, in part owing to lack of consensus among healthcare providers on what constitutes home therapy, which patients should be candidates for it, how it should be monitored, and what the barriers to home therapy are.Objectives. To conduct a modified Delphi process in order to establish consensus on home therapy among haemophilia healthcare providers in SA.Methods. Treaters experienced in haemophilia care were invited to participate in a consensus-seeking process conducted in three rounds. In round 1, provisional statements around home therapy were formulated as questions and collated in a structured list. In rounds 2 and 3, evolving versions of the questionnaire were administered to participants. Consensus was defined as ≥70% agreement among the participants.Results. The panel composition included an equal number of physicians and non-physicians. The participation rate was 100% through all three consensus rounds. The group reached consensus for 92% of the statements. Consensus of 100% was reached on starting home therapy in paediatric patients, requiring all patients on home therapy to sign informed consent and indemnity, and providing round-the-clock support for patients on home therapy.Conclusions. The home therapy consensus statements in this report have the potential to translate to policy on home therapy and to guide the initiation, practice and evaluation of home therapy programmes in SA

Home infusion program for Fabry disease: experience with agalsidase alfa in Argentina / Programa de infusión domiciliaria para la enfermedad de Fabry: experiencia con agalsidasa alfa en la Argentina

Fabry disease is an X-linked lysosomal storage disorder caused by inherited deficiency of the enzyme α-galactosidase A. Enzyme replacement treatment using agalsidase alfa significantly reduces pain, improves cardiac function and quality of life, and slows renal deterioration. Nevertheless, it is a life-long treatment which requires regular intravenous infusions and entails a great burden for patients. Our objective was to evaluate retrospectively the safety and tolerability of the home infusion of agalsidase alfa in patients with Fabry disease in Argentina. We evaluated all the patients with Fabry disease who received home infusion with agalsidase alfa 0.2 mg/kg between January 2005 and June 2011. The program included 87 patients; 51 males (mean age: 30 years) and 36 females (mean age: 34 years). A total of 5229 infusions (mean: 59 per patient; range: 1-150) were administered. A total of 5 adverse reactions were seen in 5 patients (5.7% of patients and 0.9% of the total number of infusions). All were mild in severity and resolved by reducing the rate of infusion and by using antihistaminics. All these 5 patients were positive for IgG antibodies, but none of them presented IgE antibodies and none suffered an anaphylactic shock. In our group 18 patients were switched from agalsidase beta to agalsidase alfa without complications. Home infusion with agalsidase alfa is safe, well tolerated and is associated to high compliance.

La enfermedad de Fabry es un trastorno de almacenamiento lisosomal hereditario ligado al cromosoma X ocasionado por el déficit de la enzima alfa galactosidasa A. La terapia de reemplazo enzimático utilizando agalsidasa alfa reduce significativamente el dolor, mejora la función cardíaca y la calidad de vida y enlentece el deterioro renal. Sin embargo, es un tratamiento de por vida que requiere infusiones intravenosas regulares y supone una gran carga para los pacientes. Nuestro objetivo fue evaluar retrospectivamente la tolerabilidad y la seguridad del procedimiento de infusión domiciliaria de agalsidasa alfa en pacientes con enfermedad de Fabry en Argentina. Evaluamos a todos los pacientes con enfermedad de Fabry que recibieron infusiones domiciliarias de 0.2 mg/kg de agalsidasa alfa entre enero del 2005 y junio del 2011. El programa incluyó 87 pacientes; 51 hombres (edad media: 30 años) y 36 mujeres (edad media: 34 años). Se administraron un total de 5229 infusiones (media: 59 por paciente; rango: 1-50). Se observaron un total de 5 reacciones adversas en 5 pacientes (5.7% de los pacientes y 0.9 % del número total de infusiones). Todas fueron de gravedad leve y se resolvieron reduciendo la velocidad de la infusión o usando antihistamínicos. Los 5 pacientes fueron positivos para anticuerpos IgG, pero ninguno presentó anticuerpos IgE o sufrió un shock anafiláctico. En nuestro grupo, 18 pacientes fueron cambiados de agalsidasa beta a agalsidasa alfa sin complicaciones. La infusión domiciliaria de agalsidasa alfa es segura, bien tolerada y logra una alta adherencia al tratamiento.

Percepción del paciente que recibe quimioterapia ambulatoria sobre su calidad de vida. Hospital María Auxiliadora, 2010 / Perception of the patient receiving ambulatory chemotherapy on quality of life. Hospital Maria Auxiliadora, 2010

Los objetivos fueron, determinar la percepción del paciente que recibe quimioterapia ambulatoria sobre su calidad de vida en el HAMA e Identificar la percepción en la necesidad fisiológica, seguridad, social, estima y autorrealización. Material y Método: El estudio fue de nivel aplicativo, tipo cuantitativo, método descriptivo de corte transversal. La población estuvo constituida por 30 pacientes que reciben quimioterapia ambulatoria. La técnica fue la entrevista y el instrumento una escala modificada tipo Lickert, considerando el consentimiento informado. Resultados: Del 100 por ciento (30), 53.3 por ciento (16) tienen un percepción medianamente favorable, 26 por ciento (8) desfavorable, 20 por ciento (6) favorable. En relación a la necesidad fisiológica, el 63.3 por ciento (19) es medianamente favorable, 23.3 por ciento (7) desfavorable y 13 por ciento (4) favorable. En cuanto a la necesidad de seguridad, 56 por ciento (17) es medianamente favorable; 23 por ciento (7) favorable y 20 por ciento (6) desfavorable .En la necesidad social; 70 por ciento (21) es medianamente favorable; 17 por ciento (5) favorable y 3,3 por ciento (4) desfavorable; en la necesidad de estima; 53.3 por ciento (16) es medianamente favorable, 27 por ciento (8) favorable y 20 por ciento ( 6) desfavorable y en la necesidad de autorrealización; 56.7 por ciento (17) es medianamente favorable, 23.3 por ciento favorable y 20 por ciento (6) desfavorable. Conclusiones: Un porcentaje considerable de pacientes que reciben quimioterapia ambulatoria tienen una percepción medianamente favorable, en aspectos fisiológicos, seguridad, social, estima y autorrealización referido a que los pacientes han presentado muchas náuseas en su última sesión de quimioterapia. Tuvieron miedo desde el día en que le informaron el tipo de tratamiento que llevarían; les resulta difícil entretenerse en sus tiempos de ocio por los efectos de la quimioterapia desde que inició su tratamiento. Amanecen con ganas de morirse...

The aims were, to determine the perception of the patient who receives ambulatory chemotherapy on his quality of life in the HAMA and to identify the perception in the physiological need, safety, socially, he estimates and auto-realization. Material and Method: The study was of applicative level, quantitative type, descriptive method of transverse court. The population was constituted by 30 patients who receive ambulatory chemotherapy. The technology was the interview and the instrument a modified scale type Lickert, considering the informed assent. Results: Of 100 per cent (30), 53.3 per cent (16) they have one moderately favorable perception, 26 per cent (8) unfavorably, 20 per cent (6) favorably. In relation to the physiological need, 63.3 per cent (19) is moderately favorable, 23.3 per cent (7) unfavorably and 13 per cent (4) favorably. As for the safety need, 56 per cent (17) is moderately favorable; 23 per cent (7) favorable and 20 per cent (6) unfavorable. En the social need; 70 per cent (21) is moderately favorable; 17 per cent (5) favorable and 3.3 per cent (4) unfavorable; in the need of esteem; 53.3 per cent (16) is moderately favorable, 27 per cent (8) favorably and 20 per cent (6) unfavorably and in the need of auto-realization; 56.7 per cent (17) is moderately favorable, 23.3 per cent favorable and 20 per cent (6) unfavorably. Conclusions: A considerable percentage of patients who receive ambulatory chemotherapy have a moderately favorable perception, in physiological aspects, safety, socially, he estimates and auto-realization recounted to that the patients have presented many nauseas in his last session of chemotherapy, they were afraid from the day that they said to him that it would take the treatment, it turns out to them difficult to amuse in his times of leisure for the effects of the chemotherapy, since I initiate his treatment dawns with desire of dying, feels that there are few persons who estimate it and the effects of the...

Opinión de los familiares del paciente pediátrico oncológico sobre la calidad de atención de enfermería en el Servicio de Quimioterapia Ambulatoria en el Instituto Nacional de Enfermedades Neoplásicas / Opinion of family of pediatric oncology patients about the quality of nursing care in the Service of Ambulatory Chemotherapy at the National Institute of Neoplastic Diseases

El objetivo fue determinar la opinión de los familiares del paciente pediátrico oncológico sobre la calidad de atención de enfermería en el servicio de quimioterapia ambulatoria en el instituto Nacional de Enfermedades Neoplásicas 2011. Material y Método: el estudio fue de nivel aplicativo, tipo cuantitativo, método descriptivo de corte transversal. La muestra estuvo conformada por 40 familiares. La técnica fue la entrevista y el instrumento una escala de Lickert modificada aplicado previo consentimiento informado. Resultados: Del 100 por ciento (40), 62 por ciento (25) tienen una opinión medianamente favorable, 25 por ciento (10) favorable y 13 por ciento (5) desfavorable. En la dimensión oportuna 43 por ciento (17), tienen una opinión medianamente favorable a desfavorable; de igual modo 50 por ciento (20) en la dimensión humana; 55 por ciento (22) en la dimensión segura; 50 por ciento (20) en la dimensión continua. Conclusiones: El mayor porcentaje de los familiares tienen una opinión medianamente favorable a desfavorable, de igual manera en la dimensión oportuna, humana, segura y continua referido a que no recibe una atención con respeto, no recibe una atención de acuerdo a sus necesidades en forma rápida, no se preocupa por la alimentación de su niño(a) cuando recibe su quimioterapia, no le brinda educación individual. Sin embargo existe un menor porcentaje que presentan una opinión favorable referido a que la enfermera actúa con discreción cuando el caso lo amerita, canaliza con rapidez la vía de su niño(a), se muestra amable y la entrega las indicaciones después de su quimioterapia.

The objective was to determine the views of pediatric oncology patient's family about the quality of nursing care in the ambulatory chemotherapy service at the National Institute of Neoplastic Diseases 2011. Material and Methods: The study was level application, quantitative, cross-sectional descriptive method. The sample consisted of 40 families. The technique was the interview and instrument modified Lickert scale applied informed consent. Results: of 100 per cent (40), 62 per cent (25) have a fairly favorable opinion, 25 per cent (10) in favor and 13 per cent (5) unfavorable. In dimension timely 43 per cent (17) have a fairly favorable to unfavorable opinion, likewise 50 per cent (20) in the human dimension, 55 per cent (22) in the safe dimension and 50 per cent (20) in the continuous dimension. Conclusions: the highest percentage of families have a fairly favorable to unfavorable opinion, just as in the dimension timely, humane, safe and continuously referred to not receive question with respect, do not receive care according to their needs quickly, no worries about feeding your child when receiving their chemotherapy, does not provide individual education. However, there is a smaller percentage having a favorable opinion referred to the nurse acts with discretion when the case warrants, quickly channeled via its child, is shown delivering friendly and indications after chemotherapy.

Air in the Left Brachiocephalic Vein Accompanied with Pulmonary Edema / 결핵및호흡기질환

A fifty-seven year old female patient visited the emergency department with tachypnea and a decreased mental status. The patient had been receiving fluid therapy at home and a bolus of air was injected into the fluid bottle in order to increase the infusion speed. Chest computed tomography revealed air in the left brachiocephalic vein that was accompanied with pulmonary edema the diagnosis of venous air embolism was made. Venous air embolism can result from various procedures that are performed in almost all clinical specialties and they can be fatal in cases of massive air embolism. Therefore, it is important for all clinicians to be aware of this problem.

Serum sodium level in children receiving home-mixed oral rehydration solution

This study aimed at studying the serum sodium level in infants receiving home-mixed oral rehydration solution [ORS] for the prevention and treatment of dehydration caused by acute infantile diarrhea. It included 100 infants aged from 2-18 months, having received ORS at home during the last 24 hours. All cases were subjected to full clinical examination and to a questionaire about the amount, the reconstittution of ORS as well as any other food or additional fluids adminestered with it. The questionaire included also an inquiry on the source of knowledge of the mothers about ORS and feeding practice during diarrhea. Measurement of serum sodium proved that it ranged from 120-170 with a mean of 142.2 +/- 10.36 m Eq/Litre a value which though still within normal range was significantly higher than that reported for normal controls of matching age. Only 6% of patients showed a serum sodium level above 150 m Eq/Litre and all were asymptomatic. A positive correlation could be found only between serum sodium level and the degree of dehydration. The results were discussed