RESUMEN
The purpose of this single-centre prospective non-randomised study was to evaluate the effectiveness of an interdisciplinary care programme to enhance self-management in patients with haematopoietic stem cell transplantation (HSCT). Patients undergoing HSCT, aged >14 years with informed consent were recruited (n = 79). Patients in the intervention group (IG) received standard care plus the SCION-HSCT intervention to counteract three problems after HSCT: muscle weakness, oral mucositis and malnutrition. Control group patients received standard care. Primary endpoint was global health-related quality of life (HRQoL) at discharge (EORTC QLQ C30 v. 3.0). Baseline characteristics were balanced between both groups, except physical performance (ECOG) being significantly lower for patients of the IG. At discharge, no group differences could be seen regarding HRQoL. Non-confirmatory post hoc analyses showed for patients of the IG a shorter duration of hospitalisation (MD -10.90; 95% CI -18.05 to -3.75) and increased activity during hospitalisation (MD 2.44; 95% CI 1.27-3.61). In conclusion, clinical effectiveness of the intervention could not be proven with respect to the aspired improvement of HRQoL. However, the nurse-led interdisciplinary caring programme could be carried out in every day ward routine. Further research should focus on working mechanisms of complex interventions aiming to improve HRQoL of patients undergoing HSCT.
Asunto(s)
Trasplante de Células Madre Hematopoyéticas , Neoplasias/terapia , Grupo de Atención al Paciente , Automanejo/métodos , Actividades Cotidianas , Antibacterianos/uso terapéutico , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Terapia por Ejercicio/métodos , Femenino , Estado de Salud , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Relajación Muscular/fisiología , Fuerza Muscular/fisiología , Apoyo Nutricional/métodos , Satisfacción del Paciente , Estudios Prospectivos , Calidad de Vida , Estomatitis/prevención & control , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
In Germany and Austria, more than 90% of pediatric cancer patients are enrolled into nationwide disease-specific first-line clinical trials or interim registries. Essential components are a pediatric cancer registry and centralized reference laboratories, imaging review, and tumor board assistance. The five-year overall survival rate in countries where such infrastructures are established has improved from <20% before 1950 to >80% since 1995. Today, treatment intensity is tailored to the individual patient's risk to provide the highest chances of survival while minimizing deleterious late effects. Multicenter clinical trials are internationalized and serve as platforms for further improvements by novel drugs and biologicals.
Asunto(s)
Neoplasias , Sistema de Registros , Adolescente , Austria/epidemiología , Niño , Preescolar , Ensayos Clínicos como Asunto/historia , Ensayos Clínicos como Asunto/métodos , Supervivencia sin Enfermedad , Femenino , Alemania/epidemiología , Historia del Siglo XX , Historia del Siglo XXI , Humanos , Lactante , Masculino , Estudios Multicéntricos como Asunto/historia , Estudios Multicéntricos como Asunto/métodos , Neoplasias/diagnóstico , Neoplasias/mortalidad , Neoplasias/terapia , Tasa de SupervivenciaRESUMEN
We report on two patients with haemophiliac pseudotumours who did not respond to intensified factor replacement therapy. Therefore the pseudotumours had to be removed surgically in both cases.
Asunto(s)
Calcinosis/diagnóstico , Hematoma/diagnóstico , Hemofilia A/diagnóstico , Pelvis , Muslo , Adolescente , Calcinosis/genética , Calcinosis/cirugía , Niño , Preescolar , Análisis Mutacional de ADN , Exones/genética , Factor VIII/administración & dosificación , Factor VIII/genética , Estudios de Seguimiento , Hematoma/genética , Hematoma/cirugía , Hemofilia A/genética , Humanos , Lactante , Intrones/genética , Imagen por Resonancia Magnética , Masculino , Mutación Missense/genética , Pelvis/cirugía , Empalme del ARN/genética , ARN Mensajero/genética , Reoperación , Muslo/cirugía , UltrasonografíaAsunto(s)
Tamización de Portadores Genéticos , Mutación Missense/genética , Paraplejía/genética , Deficiencia de Proteína S/genética , Proteína S/genética , Cuadriplejía/genética , Médula Espinal/irrigación sanguínea , Tromboembolia/genética , Niño , Diagnóstico Diferencial , Exones/genética , Humanos , Masculino , Paraplejía/diagnóstico , Deficiencia de Proteína S/diagnóstico , Cuadriplejía/diagnóstico , Tromboembolia/diagnósticoRESUMEN
OBJECTIVES: Translational medicine research needs a two-way information highway between 'bedside' and 'bench'. Unfortunately there are still weak links between successfully integrated information roads for bench, i.e. research networks, and bedside, i.e. regional or national health information systems. The question arises, what measures have to be taken to overcome the deficiencies. METHODS: It is examined how patient care-related costs of clinical research can be separated and shared by health insurances, whether quality of patient care data is sufficient for research, how patient identity can be maintained without conflict to privacy, how care and research records can be archived, and how information systems for care and research can be integrated. RESULTS: Since clinical trials improve quality of care, insurers share parts of the costs. Quality of care data has to be improved by introducing minimum basic data sets. Pseudonymization solves the conflict between needs for patient identity and privacy. Archiving patient care records and research records is similar and XML and CDISC can be used. Principles of networking infrastructures for care and research still differ. They have to be bridged first and harmonized later. CONCLUSIONS: To link information systems for care (bed) and for research (bench) needs technical infrastructures as well as economic and organizational regulations.