Designing rare disease care pathways in the Republic of Ireland: a co-operative model.

BACKGROUND: Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways. METHODS AND OBJECTIVES: This pilot study aimed to explore the best approach for developing national RD care pathways in the Irish healthcare system in the context of a lack of agreed methodology. Irish clinical specialists and patient/lived experience experts were asked to map existing practice against evidence-based clinical practice guidelines (CPGs) and best practice recommendations from the European Reference Networks (ERNs) to develop optimal care pathways. The study focused on the more prevalent, multisystemic rare conditions that require multidisciplinary care, services, supports and therapeutic interventions. RESULTS: 29 rare conditions were selected across 18 ERNs, for care pathway development. Multidisciplinary input from multiple specialisms was relevant for all pathways. A high level of engagement was experienced from clinical leads and patient organisations. CPGs were identified for 26 of the conditions. Nurse specialist, Psychology, Medical Social Work and Database Manager roles were deemed essential for all care pathways. Access to the therapeutic Health Service Professionals: Physiotherapy, Occupational Therapy, and Speech and Language Therapy were seen as key requirements for holistic care. Genetic counselling was highlighted as a core discipline in 27 pathways demonstrating the importance of access to Clinical Genetics services for many people with RDs. CONCLUSIONS: This study proposes a methodology for Irish RD care pathway development, in collaboration with patient/service user advocates. Common RD patient needs and health care professional interventions across all pathways were identified. Key RD stakeholders have endorsed this national care pathway initiative. Future research focused on the implementation of such care pathways is a priority.

[Computerization in urgency and emergency care]. / La informatización en urgencias y emergencias.

The health services are undergoing a significant transformation due to information and communications technologies (ICT). Computerized clinical history in hospital emergency department (ED) is improving care in this area of medicine, increasing the security of the information, access to it and favoring the implementation of clinical management. In this aspect, the EDs present certain distinctive characteristics, such as management of care times, secure management of care areas and rapid acquisition of relevant information on the patient. While there is unanimity on the advantages of incorporating the electronic history into the EDs, there is also unanimity on the difficulties involved in implementing these systems. Human factor is one of the most relevant when it comes to handling the management of the changeover to computerization. To minimize the impact there must be support for the professionals and the applications developed must be integrated into the electronic clinical history of the patient and offer useful functional applications for users and patients. The automatization of repetitive tasks, the use of forms and protocols, the implementation of messages that help in decision making and the system of clinical security are essential in computer applications. The structure and planning of information must be adjusted to the structure and needs of the EDs. The computer applications must be adapted to the functional structure of today's EDs, providing information in real time about the care situation and gathering information to generate indicators that will make it possible to evaluate and improve the different areas of work: triage, boxes, observation rooms, critical units. Management of information, which these systems provide us with, will make it possible to determine and compare the casuistry and case mix of the EDs. In short, for a computer application to be capable of dealing with the complexity of an ED, it must incorporate three elements: operations inside and outside the service, apply intuitive and multiuser user interfaces, and be able to carry out an efficient management of data at the macro, meso and micro levels.

La informatización en urgencias y emergencias / Computerization in urgency and emergency care

Los servicios sanitarios están sufriendo una importante transformación de la mano de las tecnologías de la información y comunicación (TIC). La historia clínica informatizada en los servicios de urgencias hospitalarios (SUH) está mejorando la asistencia en este ámbito de la medicina, incrementando la seguridad de la información, el acceso a la misma y favoreciendo la implantación de la gestión clínica. En este aspecto, los SUH presentan algunas características distintivas propias como la gestión de los tiempos asistenciales, la gestión segura de las áreas asistenciales y la adquisición rápida de información relevante del paciente. Aunque existe unanimidad sobre las ventajas de la incorporación de la historia electrónica a los SUH, también la hay sobre las dificultades de implantación de estos sistemas. El factor humano es uno de los más relevantes a la hora de manejar la gestión del cambio hacia la informatización. Para minimizar el impacto debe existir apoyo a los profesionales y las aplicaciones que se desarrollen deben integrarse con el historial clínico electrónico del paciente y ofrecer funcionalidades útiles para los usuarios y los pacientes. La automatización de tareas repetitivas, la utilización de formulariosy protocolos, la implementación de mensajes que ayuden en la toma de decisiones y los sistemas de seguridad clínica deben estar muy presentes en los aplicativos informáticos. La estructura y ordenación de la información debe adecuarse a la estructura y necesidades de los SUH. Los aplicativos informáticos tienen que adaptarse a la estructura funcional de los SUH actuales dando información en tiempo real de lasituación asistencial y recogiendo información para generar los indicadores que permitirán evaluar y mejorar las diferentes áreas de trabajo: triaje, boxes, salas de observación, unidades de críticos. La gestión de la información, que nos proporcionan estos sistemas, va a permitir conocer y comparar casuística o casemix de los SUH. En definitiva, para que un aplicativo informático sea capaz de abordar la complejidad de un SUH debe contemplar tres puntos de vista: las operaciones dentro y fuera del servicio, aplicar interfaces de usuario intuitivas y multiusuario y poder realizar una buena gestión de datos tanto a nivel macro, meso y micro (AU)

The health services are undergoing a significant transformation due to information and communications technologies(ICT). Computerized clinical history in hospital emergency department (ED) is improving care in this area of medicine, increasing the security of the information, access to it and favoring the implementation of clinical management. In this aspect, the EDs present certain distinctive characteristics, such as management of care times, secure management of care areas and rapid acquisition of relevant information on the patient. While there is unanimity on the advantages of incorporating the electronic history into the EDs, there is also unanimity on the difficulties involved in implementing these systems.Human factor is one of the most relevant when it comes to handling the management of the change over to computerization. To minimize the impact there must be support for the professionals and the applications developed must be integrated into the electronic clinical historyof the patient and offer useful functional applications for users and patients. The automatization of repetitive tasks, the use of forms and protocols, the implementation of messages that help in decision making and the system of clinical security are essential in computer applications.The structure and planning of information must be adjusted to the structure and needs of the EDs. The computer applications must be adapted to the functional structure of today’s EDs, providing information in real time about the care situation and gathering information to generate indicators that will make it possible to evaluate and improve the different areas of work: triage, boxes, observation rooms, critical units. Management of information, which these systems provide us with, will make it possible to determine and compare the casuistry and case mix of the EDs. In short, for a computer application to be capable of dealing with the complexity of an ED, it must incorporate three elements: operations inside and outside the service, apply intuitive and multiuser user interfaces, and be able to carry out an efficient management of data at the macro, meso and micro levels (AU)

Encefalopatía asociada a la administración de cefepime en una paciente con shock séptico e insuficiencia renal / Cefepime-associated in a patient with septic shock and renal failure

No disponible

[Tobacco use among young people in informal education settings: a survey of behaviors and opinions]. / Qué concenmos y qué actitud se puede tomar acerca del consumo de tabaco en la educación no formal?

OBJECTIVES: To obtain information about the tobacco use of young people in an informal educational setting. To analyze the profile of the young smoker and the associated social and health factors, and to discover the opinion of tobacco held by smokers and non-smokers. POPULATION AND METHODS An anonymous, self-administered, personal questionnaire was completed by volunteers aged 14 to 26 years old taking part in the activities of 3 youth centers. The questionnaire included items about the subjects' smoking habits, their awareness of the harmful effects of cigarette smoking and knowledge of tobacco cessation techniques. The survey also covered the health and social profile of young smokers. RESULTS: A total of 84 completed questionnaires were received (40 males and 44 females). The mean age of the sample was 18.3 years. Of the total, 15.4% had never smoked, 44% described themselves as smokers, and 16.6% as ex-smokers. Of the smokers, 40% smoked up to 10 cigarettes/day and 60% between 11 and 20. The age of initiation or experimentation was 13.1 years, and that of the onset of regular or daily use, 14.6 years. Only 23.5% of the smokers expressed a desire to stop smoking, and 50% had never tried to quit. Tobacco use was associated with weekend alcohol consumption in 59% of the smokers. None of the respondents were aware of the tobacco cessation aids and therapies available. CONCLUSIONS: According to the data collected by way of these questionnaires, a high percentage of the young people who participate in these leisure activities are smokers. They report a very early age of initiation and an accurate understanding of the serious consequences of tobacco use. Their lack of awareness about the available aids for tobacco cessation is a cause for concern, and the number of smokers who expressed a desire to quit was minimal. A disturbing increase in the association between alcohol and tobacco consumption was observed.

¿Qué conocemos y qué actitud se puede tomar acerca del consumo de tabaco en la educación no formal? / Tobacco use among young people in informal education settings: a survey of behaviors and opinions

OBJETIVOS: Obtener información sobre el consumo de tabaco que realizan los jóvenes en el ámbito de la "educación no formal". Analizar el perfil del joven fumador así como los factores sociosanitarios asociados y conocer la opinión sobre el tabaco que tienen tanto los no fumadores como los fumadores. POBLACIÓN Y MÉTODOS: Encuesta anónima, autoadministrada, personal y voluntaria ofrecida a los jóvenes de 14 a 26 años asistentes a las actividades de tres Casas de Juventud. La encuesta incluía preguntas sobre características del hábito tabáquico, conocimientos acerca del efecto nocivo del cigarrillo y métodos de deshabituación, así como el perfil sociosanitario del joven fumador. RESULTADOS: Se cumplimentaron 84 encuestas (40 chicos y 44 chicas). La edad media fue de 18,3 años. El 15,4 por ciento de los jóvenes no habían fumado nunca. Se declararon fumadores el 44 por ciento y ex fumadores el 16,6 por ciento. El 40 por ciento de los fumadores consumen hasta 10 cigarrillos/día, y el 60 por ciento, entre 11 y 20 cigarrillos/día. La edad de contacto o experimentación fue a los 13,1 años y la del consumo regular o diario a los 14,6 años. Sólo el 23,5 por ciento de los fumadores quiere dejarlo y el 50 por ciento no lo ha intentado nunca. En el 59 por ciento de los fumadores se asocia el consumo de alcohol los fines de semana. Ninguno de ellos conocía los recursos existentes para dejar de fumar. CONCLUSIONES: Según los datos de la encuesta, hay un alto porcentaje de fumadores entre los jóvenes que acuden a las actividades de tiempo libre, con una edad de inicio muy temprana y un conocimiento exacto de su gravedad. Es preocupante el desconocimiento que existe sobre las posibilidades que se ofrecen para dejar de fumar, y mínimo el número de fumadores que quieren dejarlo. Se observa un ascenso preocupante del consumo conjunto de alcohol y tabaco (AU)

Efficacy of informational letters on hepatitis B immunization rates in university students.

A randomized, controlled trial was conducted at a private university to determine whether students who received an informational letter (n = 366) would be more likely to receive a hepatitis B vaccination than students in a control group (n = 366). Surveys were conducted to determine the students' reasons for deciding to be vaccinated. Rates of hepatitis B immunization were significantly higher among students assigned to the intervention group (10.7%) than among the control group (1.9%). Vaccinated students were more likely than unvaccinated students to report having had 3 or more sexual partners in the past 6 months. Students at higher risk for hepatitis B infection were more likely than others to be vaccinated. Although the overall rate of immunization was low, informational letters about the hepatitis B virus and vaccine were found to be efficacious in increasing hepatitis B immunization rates among students in the setting of a concurrent educational campaign.

The cost-effectiveness of automatic implantable cardiac defibrillators: results from MADIT. Multicenter Automatic Defibrillator Implantation Trial.

BACKGROUND: The recently reported Multicenter Automatic Defibrillator Implantation Trial (MADIT) showed improved survival in selected asymptomatic patients with coronary disease and nonsustained ventricular tachycardia. The economic consequences of defibrillator management in this patient population are unknown. METHODS AND RESULTS: Patients were followed up to quantify their use of healthcare services, including hospitalizations, physician visits, medications, laboratory tests, and procedures, during the trial. The costs of these services, including the costs of the defibrillator, were determined in patients randomized to defibrillator and nondefibrillator therapy. Incremental cost-effectiveness ratios were calculated by relating these costs to the increased survival associated with the use of the defibrillator. The average survival for the defibrillator group over a 4-year period was 3.66 years compared with 2.80 years for conventionally treated patients. Accumulated net costs were $97,560 for the defibrillator group compared with $75,980 for individuals treated with medications alone. The resulting incremental cost-effectiveness ratio of $27,000 per life-year saved compares favorably with other cardiac interventions. Sensitivity analyses showed that the incremental cost-effectiveness ratio would be reduced to approximately $23,000 per life-year saved if transvenous defibrillators were used instead of the older devices, which required thoracic surgery for implantation. CONCLUSIONS: An implanted cardiac defibrillator is cost-effective in selected individuals at high risk for ventricular arrhythmias.