Biotecnología y bioética: implicaciones sociales del Proyecto Genoma Humano

Si bien el principal objetivo del Proyecto Genoma Humano es alcanzar un mayor conocimiento sobre el patrimonio genético del ser humano, este proyecto tiene además diversas implicaciones de carácter social. El autor revisa cuáles son las implicaciones «gen-éticas» del Proyecto genoma Humano, tanto desde el punto de vista de la teoría económica como en cuanto a sus posibles repercusiones sobre la salud pública. = The objective of the Human Genome Project from the beginning is to achieve a greater understanding of the human genes. The author of this article considers the approach and the social position of the mentioned Project. In his discussion he presented the «gen-ethic» implications, carrying out an analysis from the point of view of the Economic Theory and reveals the possible involvement of the genetic advances in the public health

Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study contex

El valor terapéutico en oncología. la perspectiva de pacientes, familiares y profesionales

Objective: The aim of the study is to explore if cancer patients actively participate in their care and are involved in treatment decisions. Method: 4 focus groups were organized for a total of 29 participants. One group with patients older than 63 years old, one group with patients younger than 63 years old and one group with caregivers. Moreover, one group was held with the participation of oncologists. Results: Participants have identified the need to receive clear information about treatment options, besides professionals’ advice and experience. Communication skills must be given to professionals; moreover patients need a referent who can accompany them during making decision process. Conclusions: Patients are taking new roles, are more participatory and want to assume more responsibilities about clinical decisions. Patients have a right to understand their illness, prognosis and treatment options. More training programs for physicians are need in order to tailor treatment options to patients’ preferences and needs.Objetivo: El objetivo de este estudio es valorar en qué medida los afectados de cáncer asumen actitudes de participación en relación al propio plan terapéutico, además de conocer la opinión de familiares y la de los profesionales que les atienden. Método: Se organizaron 4 grupos focales, con un total de 29 participantes. Un grupo con afectados mayores de 63 años, un grupo con afectados menores de 63 años y un grupo con familiares de afectados por distintas patologías oncológicas. Además, se organizó un grupo con profesionales sanitarios para conocer su opinión. Resultados: Los participantes de los distintos grupos han identificado la necesidad de disponer de información clara acerca de las posibilidades terapéuticas, además de los consejos y la experiencia que puede aportar el profesional. Debería realizarse formación en habilidades de comunicación, además de contar con un profesional de referencia que pueda ofrecer orientación y apoyo durante el proceso de toma de decisiones. Conclusiones: Existe en la actualidad un nuevo rol de paciente con un perfi l más activo, que desea asumir mayor responsabilidad en las decisiones clínicas. Los pacientes tienen el derecho a recibir la información sobre la propia enfermedad, el pronóstico y las opciones terapéuticas disponibles. Es necesaria mayor formación a los profesionales sanitarios que permita ajustar las opciones terapéuticas a las necesidades y preferencias de los pacientes y familiares

The development a spanish questionnaire to assess cancer survivors’ unmet needs (CESC)

Introducción: Según datos de la SEOM, existen en la actualidad más de un millón y medio de supervivientes de cáncer en España. El objetivo de este estudio es el desarrollo y evaluación de un cuestionario para medir las necesidades no cubiertas de supervivientes de cáncer. Método: Se desarrolló y evaluó un cuestionario auto-administrado para detectar las necesidades no cubiertas de supervivientes de cáncer. Durante la Fase 1 se definió el constructo, se revisó la literatura científica y se consideró un estudio cualitativo desarrollado previamente. La propuesta del Cuestionario Español para Medir Necesidades no Cubiertas de Supervivientes de Cáncer (CESC) se evaluó sucesivamente por un panel de expertos hasta obtener una versión que incluye las propuestas formuladas. En la Fase 2, el cuestionario fue completado por un total de 109 supervivientes de cáncer, a fin de analizar sus propiedades psicométricas. Resultados: El cuestionario CESC incluyó un total de 25 ítems o necesidades relevantes, mostrando tener buenas propiedades de fiabilidad y validez. Como resultado del análisis estadístico se obtuvieron 3 Factores: físico, emocional y laboral-económico. Conclusiones: El cuestionario CESC es un primer instrumento disponible en español, para facilitar la detección de necesidades de servicios específicos dirigidos a la población de supervivientes de cáncer. Los resultados, si bien preliminares, son muy alentadores.Background: To develop and evaluate a questionnaire to measure cancer survivors’ unmet needs. Methods: A self-report measure of cancer survivors’ unmet needs was developed. In Phase I, it was taken into consideration the construct definition, literature review and previous qualitative research that identified needs in survivors. Spanish Questionnaire of Cancer Survivors’ Unmet Needs (CESC) was review by an expert panel up to the final version. In Phase 2, the measure was completed by 109 cancer survivors. Results: CESC questionnaire included 25 need items. Good acceptability, internal consistency and validity were demonstrated. Factor analysis identified three factors: Physical, Emotional and Employment/Economic. Conclusions: The CESC, first instrument in Spanish, will facilitate the evaluation of target services and generation of service delivery recommendations for cancer survivors. Even if it is a preliminary version, results are encouraging

Therapeutic value in oncology. Patients' caregivers' and professionals' perspective

Objective: The aim of the study is to explore if cancer patients actively participate in their care and are involved in treatment decisions. Method: 4 focus groups were organized for a total of 29 participants. One group with patients older than 63 years old, one group with patients younger than 63 years old and one group with caregivers. Moreover, one group was held with the participation of oncologists. Results: Participants have identified the need to receive clear information about treatment options, besides professionals’ advice and experience. Communication skills must be given to professionals; moreover patients need a referent who can accompany them during making decision process. Conclusions: Patients are taking new roles, are more participatory and want to assume more responsibilities about clinical decisions. Patients have a right to understand their illness, prognosis and treatment options. More training programs for physicians are need in order to tailor treatment options to patients’ preferences and needs

Standardizing admission and discharge processes to improve patient flow: A cross sectional study

Abstract Background: The aim of this study was to evaluate how hospital capacity was managed focusing on standardizing the admission and discharge processes

Desarrollo del cuestionario español para medir necesidades no cubiertas de supervivientes de cáncer (CESC)

Introducción: Según datos de la SEOM, existen en la actualidad más de un millón y medio de supervivientes de cáncer en España. El objetivo de este estudio es el desarrollo y evaluación de un cuestionario para medir las necesidades no cubiertas de supervivientes de cáncer. Método: Se desarrolló y evaluó un cuestionario auto-administrado para detectar las necesidades no cubiertas de supervivientes de cáncer. Durante la Fase 1 se definió el constructo, se revisó la literatura científica y se consideró un estudio cualitativo desarrollado previamente. La propuesta del Cuestionario Español para Medir Necesidades no Cubiertas de Supervivientes de Cáncer (CESC) se evaluó sucesivamente por un panel de expertos hasta obtener una versión que incluye las propuestas formuladas. En la Fase 2, el cuestionario fue completado por un total de 109 supervivientes de cáncer, a fin de analizar sus propiedades psicométricas. Resultados: El cuestionario CESC incluyó un total de 25 ítems o necesidades relevantes, mostrando tener buenas propiedades de fiabilidad y validez. Como resultado del análisis estadístico se obtuvieron 3 Factores: físico, emocional y laboral-económico. Conclusiones: El cuestionario CESC es un primer instrumento disponible en español, para facilitar la detección de necesidades de servicios específicos dirigidos a la población de supervivientes de cáncer. Los resultados, si bien preliminares, son muy alentadoresBackground: To develop and evaluate a questionnaire to measure cancer survivors' unmet needs. Methods: A self-report measure of cancer survivors' unmet needs was developed. In Phase I, it was taken into consideration the construct definition, literature review and previous qualitative research that identified needs in survivors. Spanish Questionnaire of Cancer Survivors' Unmet Needs (CESC) was review by an expert panel up to the final version. In Phase 2, the measure was completed by 109 cancer survivors. Results: CESC questionnaire included 25 need items. Good acceptability, internal consistency and validity were demonstrated. Factor analysis identified three factors: Physical, Emotional and Employment/Economic. Conclusions: The CESC, first instrument in Spanish, will facilitate the evaluation of target services and generation of service delivery recommendations for cancer survivors. Even if it is a preliminary version, results are encouragin

Effectiveness of a Multicomponent Training Program on Physical Performance and Muscle Quality in Older Adults: A Quasi-Experimental Study.

Aging is associated with a decrease in functional capacity, manifested by a loss of strength, physical performance and muscle quality. Multicomponent training (MCT), characterized by the combination of at least three types of training, could be a good strategy to counteract these changes. To date there are no studies evaluating the effectiveness of MCT in improving both physical performance and muscle quality simultaneously. The aim of this study is to evaluate the changes produced by an MCT program on both physical performance and muscle quality in a population of healthy older adults. Sixteen healthy older adults were recruited to perform a 15-session multicomponent training intervention. Physical performance was assessed by different functional tests, and muscle quality was assessed by tensiomyography and myotonometry. The main results of this study show some improvement in functional tests, but not in muscle quality parameters, except for vastus lateralis stiffness. MCT is able to generate improvements in the physical performance of older adults, but these improvements are not reflected in muscle quality parameters measured by tensiomyography and myotonometry