EURECCA colorectal: multidisciplinary mission statement on better care for patients with colon and rectal cancer in Europe

Background: Care for patients with colon and rectal cancer has improved in the last twenty years however still considerable variation exists in cancer management and outcome between European countries. Therefore, EURECCA, which is the acronym of European Registration of cancer care, is aiming at defining core treatment strategies and developing a European audit structure in order to improve the quality of care for all patients with colon and rectal cancer. In December 2012 the first multidisciplinary consensus conference about colon and rectum was held looking for multidisciplinary consensus. The expert panel consisted of representatives of European scientific organisations involved in cancer care of patients with colon and rectal cancer and representatives of national colorectal registries. Methods: The expert panel had delegates of the European Society of Surgical Oncology (ESSO), European Society for Radiotherapy & Oncology (ESTRO), European Society of Pathology (ESP), European Society for Medical Oncology (ESMO), European Society of Radiology (ESR), European Society of Coloproctology (ESCP), European CanCer Organisation (ECCO), European Oncology Nursing Society (EONS) and the European Colorectal Cancer Patient Organisation (EuropaColon), as well as delegates from national registries or audits. Experts commented and voted on the two web-based online voting rounds before the meeting (between 4th and 25th October and between the 20th November and 3rd December 2012) as well as one online round after the meeting (4th-20th March 2013) and were invited to lecture on the subjects during the meeting (13th-15th December 2012). The sentences in the consensus document were available during the meeting and a televoting round during the conference by all participants was performed. All sentences that were voted on are available on the EURECCA website www.canceraudit.eu. The consensus document was divided in sections describing evidence based algorithms of diagnostics, pathology, surgery, medical oncology, radiotherapy, and follow-up where applicable for treatment of colon cancer, rectal cancer and stage IV separately. Consensus was achieved using the Delphi method. Results: The total number of the voted sentences was 465. All chapters were voted on by at least 75% of the experts. Of the 465 sentences, 84% achieved large consensus, 6% achieved moderate consensus, and 7% resulted in minimum consensus. Only 3% was disagreed by more than 50% of the members. Conclusions: It is feasible to achieve European Consensus on key diagnostic and treatment issues using the Delphi method. This consensus embodies the expertise of professionals from all disciplines involved in the care for patients with colon and rectal cancer. Diagnostic and treatment algorithms were developed to implement the current evidence and to define core treatment guidance for multidisciplinary team management of colon and rectal cancer throughout Europe.

Sobre tránsitos, identidades y crecimiento postraumático en cáncer hereditario

A lo largo de la historia de la psico-oncología los conceptos de personalidad e identidad de los pacientes oncológicos se han utilizado frecuentemente tanto para explicar la aparición de la enfermedad como los cambios personales inducidos por la misma. Ya sea históricamente vinculado a los orígenes y causas en forma de personalidad que predispone al enfermar, o como transformación identitaria una vez el sujeto ha superado la enfermedad, las formas de ser constituyen también punto de arranque y destino de una parte importante del trabajo psicoterapéutico. Tras analizar las teorías socio-cognitivas de Janoff-Bulman y de Tedeschi y Calhoun sobre el fenómeno denominado crecimiento postraumático los autores se interrogan sobre el posible impacto de los modelos identarios y de crecimiento personal aplicados al ámbito del cáncer hereditario y el consejo genético.

Evaluation of a pharmacist intervention on patients initiating pharmacological treatment for depression: a randomized controlled superiority trial

Major depression is associated with high burden, disability and costs. Non-adherence limits the effectiveness of antidepressants. Community pharmacists (CP) are in a privileged position to help patients cope with antidepressant treatment. The aim of the study was to evaluate the impact of a CP intervention on primary care patients who had initiated antidepressant treatment. Newly diagnosed primary care patients were randomised to usual care (UC) (92) or pharmacist intervention (87). Patients were followed up at 6 months and evaluated three times (Baseline, and at 3 and 6 months). Outcome measurements included clinical severity of depression (PHQ-9), health-related quality of life (HRQOL) (Euroqol-5D) and satisfaction with pharmacy care. Adherence was continuously registered from the computerised pharmacy records. Non-adherence was defined as refilling less than 80% of doses or having a medication-free gap of more than 1 month. Patients in the intervention group were more likely to remain adherent at 3 and 6 months follow-up but the difference was not statistically significant. Patients in the intervention group showed greater statistically significant improvement in HRQOL compared with UC patients both in the main analysis and PP analyses. No statistically significant differences were observed in clinical symptoms or satisfaction with the pharmacy service. The results of our study indicate that a brief intervention in community pharmacies does not improve depressed patients' adherence or clinical symptoms. This intervention helped patients to improve their HRQOL, which is an overall measure of patient status.

Development process and initial validation of the ethical conflict in nursing questionnaire-critical care version

Background: Ethical conflicts are arising as a result of the growing complexity of clinical care, coupled with technological advances. Most studies that have developed instruments for measuring ethical conflict base their measures on the variables"frequency" and"degree of conflict". In our view, however, these variables are insufficient for explaining the root of ethical conflicts. Consequently, the present study formulates a conceptual model that also includes the variable"exposure to conflict", as well as considering six"types of ethical conflict". An instrument was then designed to measure the ethical conflicts experienced by nurses who work with critical care patients. The paper describes the development process and validation of this instrument, the Ethical Conflict in Nursing Questionnaire Critical Care Version (ECNQ-CCV). Methods: The sample comprised 205 nursing professionals from the critical care units of two hospitals in Barcelona (Spain). The ECNQ-CCV presents 19 nursing scenarios with the potential to produce ethical conflict in the critical care setting. Exposure to ethical conflict was assessed by means of the Index of Exposure to Ethical Conflict (IEEC), a specific index developed to provide a reference value for each respondent by combining the intensity and frequency of occurrence of each scenario featured in the ECNQ-CCV. Following content validity, construct validity was assessed by means of Exploratory Factor Analysis (EFA), while Cronbach"s alpha was used to evaluate the instrument"s reliability. All analyses were performed using the statistical software PASW v19. Results: Cronbach"s alpha for the ECNQ-CCV as a whole was 0.882, which is higher than the values reported for certain other related instruments. The EFA suggested a unidimensional structure, with one component accounting for 33.41% of the explained variance. Conclusions: The ECNQ-CCV is shown to a valid and reliable instrument for use in critical care units. Its structure is such that the four variables on which our model of ethical conflict is based may be studied separately or in combination. The critical care nurses in this sample present moderate levels of exposure to ethical conflict. This study represents the first evaluation of the ECNQ-CCV.

Development process and initial validation of the ethical conflict in nursing questionnaire-critical care version

Background: Ethical conflicts are arising as a result of the growing complexity of clinical care, coupled with technological advances. Most studies that have developed instruments for measuring ethical conflict base their measures on the variables"frequency" and"degree of conflict". In our view, however, these variables are insufficient for explaining the root of ethical conflicts. Consequently, the present study formulates a conceptual model that also includes the variable"exposure to conflict", as well as considering six"types of ethical conflict". An instrument was then designed to measure the ethical conflicts experienced by nurses who work with critical care patients. The paper describes the development process and validation of this instrument, the Ethical Conflict in Nursing Questionnaire Critical Care Version (ECNQ-CCV). Methods: The sample comprised 205 nursing professionals from the critical care units of two hospitals in Barcelona (Spain). The ECNQ-CCV presents 19 nursing scenarios with the potential to produce ethical conflict in the critical care setting. Exposure to ethical conflict was assessed by means of the Index of Exposure to Ethical Conflict (IEEC), a specific index developed to provide a reference value for each respondent by combining the intensity and frequency of occurrence of each scenario featured in the ECNQ-CCV. Following content validity, construct validity was assessed by means of Exploratory Factor Analysis (EFA), while Cronbach"s alpha was used to evaluate the instrument"s reliability. All analyses were performed using the statistical software PASW v19. Results: Cronbach"s alpha for the ECNQ-CCV as a whole was 0.882, which is higher than the values reported for certain other related instruments. The EFA suggested a unidimensional structure, with one component accounting for 33.41% of the explained variance. Conclusions: The ECNQ-CCV is shown to a valid and reliable instrument for use in critical care units. Its structure is such that the four variables on which our model of ethical conflict is based may be studied separately or in combination. The critical care nurses in this sample present moderate levels of exposure to ethical conflict. This study represents the first evaluation of the ECNQ-CCV.

La Educación Prohibida: La Utopía se hace realidad

Bien se sabe que niños, niñas y jóvenes que se encuentran en situación de enfermedad se ven inmersos/as en un estado de ‘ausencia’ de su vida cotidiana, de su vida ‘normal’ pues están expuestos a una realidad de cambio no sólo físico, sino también emocional al tener que dejar a sus amigos y amigas, a sus familias, a sus escuelas en caso de tener que hospitalizarse, y por tanto el separarse de su contexto natural genera una sensación de inestabilidad que por lo general aumenta al enfrentarse al temor que la misma enfermedad les provoca. Una etapa adversa de sus vidas que repercute en sus familias y en sus amistades. Surgen miedos sobre la enfermedad misma, los cuales pueden aumentar si se diagnostica una enfermedad crónica. Dicho período de inestabilidad reaparece cuando regresan a sus hogares y a su vida anterior a la hospitalización: es un volver a adaptarse a la escuela, una realidad que les exigirá situarse nuevamente en su hogar, retomar las relaciones sociales con su entorno de amigos/as, con sus compañeros y compañeras de clase, con sus maestros y maestras, etc. o continuar su escolarización en sus hogares, a través de la Atención Domiciliaria. Esta situación invita a pensar el rol que tienen los adultos significativos que les acompañan durante su enfermedad, en estos procesos de socialización y adaptación a través de la educación y ahí resulta interesante visualizar a los docentes de este contexto (Aulas Hospitalarias y Atención Domiciliaria) como personas clave que pueden colaborar en transformar esta situación de adversidad en oportunidades de bienestar, desde el ámbito educativo.

Multidimensionalidad de la Pedagogía Hospitalaria desde la Transdisciplinariedad: Análisis de Necesidades en los Itinerarios Formativos

Esta comunicación pretende presentar los objetivos y la metodología de investigación de un proyecto que recoge las impresiones de los distintos agentes que intervienen en la atención de los niños (as) y jóvenes en situación de enfermedad, e identificar y establecer las necesidades en materia de formación integral desde un punto de vista transdisciplinar. Se trata de una investigación en proceso, la cual ha sido diseñada con metodología de investigación cual ativa, a través de la realización de grupos de discusión (focus group) y planteada en dos etapas para cada país: 1) Realización de grupos de discusión en Venezuela, Italia, España y Estados Unidos registrados mediante audio-grabadoras y realización de la transcripción de las grabaciones; 2) Análisis hermenéutico de las transcripciones a través del programa Atlas-Ti, 6.2, con el diseño de categorías y subcategorías para los diferentes países, para comparar los resultados obtenidos en cada caso.

A common cognitive, psychiatric, and dysmorphic phenotype in carriers of NRXN1 deletion

Deletions in the 2p16.3 region that includes the neurexin (NRXN1) gene are associated with intellectual disability and various psychiatric disorders, in particular, autism and schizophrenia. We present three unrelated patients, two adults and one child, in whom we identified an intragenic 2p16.3 deletion within the NRXN1 gene using an oligonucleotide comparative genomic hybridization array. The three patients presented dual diagnosis that consisted of mild intellectual disability and autism and bipolar disorder. Also, they all shared a dysmorphic phenotype characterized by a long face, deep set eyes, and prominent premaxilla. Genetic analysis of family members showed two inherited deletions. A comprehensive neuropsychological examination of the 2p16.3 deletion carriers revealed the same phenotype, characterized by anxiety disorder, borderline intelligence, and dysexecutive syndrome. The cognitive pattern of dysexecutive syndrome with poor working memory and reduced attention switching, mental flexibility, and verbal fluency was the same than those of the adult probands. We suggest that in addition to intellectual disability and psychiatric disease, NRXN1 deletion is a risk factor for a characteristic cognitive and dysmorphic profile. The new cognitive phenotype found in the 2p16.3 deletion carriers suggests that 2p16.3 deletions might have a wide variable expressivity instead of incomplete penetrance

Formación y aplicación de las terapias complementarias en los cuidados de enfermería al paciente oncológico

Objetivo general: Analizar la formación de las enfermeras y la aplicación de las terapias complementarias (TC) en los cuidados de enfermería al paciente oncológico. Ámbito de estudio: El estudio se realizó en el hospital Duran i Reynals de l"Hospitalet de Llobregat, en las unidades de: hematología clínica, terapia intensiva, tratamiento programado, hospital de día, oncología médica, cuidados paliativos, consultas externas, soporte de la atención continuada, servicio de oncología radioterápica y en el equipo de soporte hospitalario. Diseño: Estudio descriptivo transversal. Método: Aplicación de un cuestionario elaborado que consta de dos apartados, uno de datos demográficos y otro apartado con 8 preguntas especificas. Participantes: Enfermeras del área asistencial de todos los turnos que trabajen en las unidades mencionadas. Análisis de datos: Para el análisis de los datos se ha utilizado el paquete estadístico SPSS15.0 para Windows y se ha realizado un análisis descriptivo para todas las variables. Variables cualitativas: frecuencias y porcentajes. Variables cuantitativas: medidas de tendencia central y de dispersión. Resultados: El 58,8% de las enfermeras ha realizado algún tipo de formación en TC. Las intervenciones mente-cuerpo son las más efectuadas en cuanto a formación, seguidas de las terapias manuales y las terapias de base energética. La relajación-visualización es la terapia que más aplican las enfermeras oncológicas. Conclusiones: La formación de las enfermeras oncológicas en las TC es fundamental para poder informar y asesorar a sus pacientes y poder cuidarlos de una forma más holística. La falta de tiempo y de disposición del hospital al reconocimiento y valor de las TC son los principales factores de dificultad que se encuentran las enfermeras oncológicas.

Attitudes and burden in relatives of patients with schizophrenia in a middle income country

BACKGROUND: Most studies of family attitudes and burden have been conducted in developed countries. Thus it is important to test the generalizability of this research in other contexts where social conditions and extended family involvement may be different. The aim of this study was to assess the relationship between the attitudes of caregivers and the burden they experience in such a context, namely Arica, a town located in the northernmost region of Chile, close to the border with Peru and Bolivia. METHODS: We assessed attitudes towards schizophrenia (including affective, cognitive and behavioural components) and burden (including subjective distress, rejection and competence) in 41 main caregivers of patients with schizophrenia, all of whom were users of Public Mental Health Services in Arica. RESULTS: Attitude measures differed significantly according to socio-demographic variables, with parents (mainly mothers) exhibiting a more negative attitude towards the environment than the rest of the family (t = 4.04; p = 0.000).This was also the case for caregivers with a low educational level (t = 3.27; p < 0.003), for the oldest caregivers (r = 0.546; p = 0.000) and for those who had spent more time with the patient (r = 0.377; p = 0.015). Although attitudes had significant association with burden, their explanatory power was modest (R2 = .104, F = 4,55; p = .039). CONCLUSIONS: Similar to finding developed countries, the current study revealed a positive and significant relationship between the attitudes of caregivers and their burden. These findings emphasize the need to support the families of patients with schizophrenia in this social context.

HPN rara, cara i desconeguda : Documental sobre l’Hemoglobinúria Paroxística Nocturna

Aquest treball acadèmic reflecteix, a través d’un documental audiovisual, la situació dels malalts d’HPN (Hemoglobinúria Paroxística Nocturna) a Espanya. Són un col•lectiu d’uns 300 afectats. Com a malaltia rara que és, fa que cada pacient tingui una situació molt diferent. En aquest treball, fet a partir d’entrevistes a malalts i experts, s’intenta explicar com viuen el seu dia a dia i quins problemes tenen.

La realidad de los cuidados a la familia del paciente crítico en España: la necesidad de actuar ya

Vemos y no hacemos, describimos y no actuamos, conocemos pero no cambiamos. Esta frase reiterativa describe la naturaleza de muchas situaciones de la práctica enfermera en las que se dispone de una descripción precisa del entorno o contexto en el que se sitúan, de aquello que las personas a las que cuidamos necesitan y de la actuación idónea en estos casos, pero no existe una repercusión en los cuidados enfermeros del día a día...

El cervell té mecanismes per a les metàfores

Al cervell li costa entendre i generar metàfores. Comprendre el llenguatge figuratiu implica necessàriament la utilització simultània de diversos circuits neurals, que han d"extreure informació no literal a partir de paraules que tanmateix també tenen un significat concret. Per entendre aquesta facultat exclusivament humana, Nira Mashal i els seus col·laboradors, de la Universitat Ben-Ilan de Ramat Gan i del centre de salut mental Aviv-Brull de Tel Aviv, a Israel, han monitoritzat el funcionament del cervell en un grup de voluntaris mentre comprenien metàfores o expressions literals, i l"han comparat amb el de malalts d"esquizofrènia, una patologia que es caracteritza, entre altres aspectes, per la incapacitat d"entendre-les.

Maneig i compliment terapèutic de les persones afectades per MPOC de l'ABS Girona 2

L’ús de programes senzills, dirigits a malalts amb MPOC comporta una reducció significativa del nombre de les hospitalitzacions. Amb MPOC com amb qualsevol patologia crònica, és fonamental que tant el pacient com la família rebin una informació adequada sobre la malaltia, els factors de risc, els hàbits que faciliten la progressió i les mesures terapèutiques necessàries en cada moment de la malaltia. És fonamental revisar el compliment del tractament i la tècnicad’inhalació, i els malalts amb insuficiència respiratòria crònica amb tractament d’oxigenoteràpia domiciliària cal revisar els objectius d’aquest tractament, les diferents fonts existents i com utilitzar-les

Successful therapies for Alzheimer's disease: why so many in animal models and none in humans?

Peering into the field of Alzheimer's disease (AD), the outsider realizes that many of the therapeutic strategies tested (in animal models) have been successful. One also may notice that there is a deficit in translational research, i.e., to take a successful drug in mice and translate it to the patient. Efforts are still focused on novel projects to expand the therapeutic arsenal to 'cure mice.' Scientific reasons behind so many successful strategies are not obvious. This article aims to review the current approaches to combat AD and to open a debate on common mechanisms of cognitive enhancement and neuroprotection. In short, either the rodent models are not good and should be discontinued, or we should extract the most useful information from those models. An example of a question that may be debated for the advancement in AD therapy is: In addition to reducing amyloid and tau pathologies, would it be necessary to boost synaptic strength and cognition? The debate could provide clues to turn around the current negative output in generating effective drugs for patients. Furthermore, discovery of biomarkers in human body fluids, and a clear distinction between cognitive enhancers and disease modifying strategies, should be instrumental for advancing in anti-AD drug discovery.