Development of a Guide to Multidimensional Needs Assessment in the Palliative Care Initial Encounter (MAP).

Context Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. Objectives To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). Methods A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. Results The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). Conclusion MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.post-print820 K

El aprendizaje de la compasión en cuidados paliativos

RESUMENAntecedentes: Numerosos autores recomiendan la compasión en la práctica clínica, aunque no se han encontrado estudios multifocales (de pacientes, familiares, profesionales, profesores y estudiantes) aplicados en Cuidados Paliativos (CP).OBJETIVO: Describir el concepto, las características y manifestaciones de la compasión en la práctica asistencial en CP e investigar las formas de aprendizaje de la práctica compasiva desde una perspectiva multifocal.METODOLOGÍA: Investigación Cualitativa. Los datos se recolectaron a través de entrevistas en profundidad y grupos focales, analizados y codificados usando la técnica de la teoría fundamentada. Se obtuvo la aprobación de un Comité de Ética.La muestra intencionada estuvo constituida por 29 participantes, los cuáles fueron: pacientes y familiares de pacientes con enfermedad avanzada, profesionales asistenciales de CP y expertos en bioética, profesores universitarios y estudiantes de Ciencias de la Salud. Los datos se recogieron en un Hospital de CP en Madrid, España.RESULTADOS: La compasión se presentó como un proceso complejo que requiere gran profundización. Se explica a través de tres categorías emergentes: Es (I) un concepto que debe ser clarificado, que precisa de unas (II) capacidades personales para manifestarse con pacientes al final de la vida y que requiere (III) la sensibilización con el dolor del otro para actuar con intención de ayudar. El aprendizaje de la compasión se concreta a través de cuatro categorías emergentes: (A) el aprendizaje teórico-práctico, (B) a través de las personas, (C) en la experiencia cercana al dolor y por último (D) a través de la reflexión y con el conocimiento personal.CONCLUSIONES: El concepto de la compasión no es bien entendido por la sociedad actual, si bien sus características y manifestaciones son requeridas y muy valoradas. El aprendizaje de la compasión puede llevarse a cabo con gran variedad de métodos aunque es preciso un interés personal por desarrollarlo.Los aspectos novedosos de esta investigación es que se valora la importancia de la ética, la atención centrada en la persona, el uso de la anticipación compasiva, los elementos personales facilitadores, la figura del tutor como ejemplo a seguir, la importancia de la asertividad como despertador de la compasión, la vivencia experiencial y reflexión constante, para desarrollar una conciencia compasiva.La práctica de la compasión facilita el bienestar de las personas en el final de vida y mejora la calidad de la práctica clínica, puede prevenir el burnout de los profesionales y además ser un motivador vocacional. Se requiere el desarrollo de futuras investigaciones que profundicen en todos estos aspectos. La compasión puede definirse como: «una virtud que implica sensibilizarse con el sufrimiento, adelantarse a las necesidades de los otros, y actuar de forma ética, promoviendo el bienestar de esa persona, para intentar solucionar esa situación».La compasión puede definirse como: «una virtud que implica adelantarse a las necesidades de los otros, sensibilizarse con el sufrimiento y actuar de forma ética, promoviendo el bienestar de esa persona, para intentar solucionar esa situación».PALABRAS CLAVE:Compasión. Aprendizaje. Cuidados Paliativos. Sufrimiento. Investigación Cualitativa ABSTRACT Background: Compassion in clinical practice is recommended by numerous authors, but no multifocal studies (of patients, relatives, professionals, teachers and students) in Palliative Care (PC) have been found in Palliative Care. AIM: To describe the concept, characteristics and manifestations of compassion in clinical practice in PC and to investigate the learning of compassionate practice from a multifocal perspective. DESIGN: Qualitative Research. The data were obtained through in-depth interviews and focus groups, analyzed and coded according to the grounded theory. The study was approved by an Ethics Committee. The intended sample consisted of 29 participants, who were: patients and relatives of patients with advanced disease, PC professionals and bioethics experts, university professors and Health Sciences students. The data were collected in a PC Hospital in Madrid, Spain. RESULTS: Compassion presented as a complex process that requires great depth. It is explained by three emerging categories: (I) A concept that must be clarified, based in (II) certain personal abilities to manifest itself towards patients at the end of life and requiring that the individual (III) is sensitive to the pain of other person and acts with a helping intention. The learning of compassion is explained by four emerging categories: the theoretical-practical (A) learning, (B) through the people, (C) with an experience close to pain and finally (D) through reflection and personal knowledge. CONCLUSIONS: The concept of compassion is not well understood by today's society, although its characteristics and manifestations are required and highly valued. The learning of compassion can be carried out with a variety of methods, although a personal interest in developing it is a necessary requisite. The novel aspects highlighted by this study are the importance of ethics, the person-centered attention, the use of compassionate anticipation, personal facilitating elements, the figure of the tutor as an example to be followed, the importance of assertiveness as a trigger for compassion and the experiential experience and constant reflection, to develop compassionate conscience. The practice of compassion promotes the well-being of people at the end of life and improves the quality of clinical practice, can prevent professional burnout and also be a vocational motivator. The development of future investigations to deepen in all these aspects is required. Compassion can be defined as: "a virtue that implies sensitivity to suffering, anticipating the needs of others, and by acting ethically, promotes the well-being of that person, to try to solve that situation." KEY WORDS: Compassion. Learning. Palliative Care. Suffering. Qualitative Research.<br /

Actitudes y opiniones de los médicos ante la eutanasia y el suicidio médicamente asistido

La atención médica al final de la vida es una prestación sanitaria básica, un derecho de los pacientes y una demanda creciente de los ciudadanos. La Organización Médica Colegial (OMC) y diversas Sociedades Científicas apoyan y promueven la máxima calidad en dicha prestación. Algunos conceptos relacionados con el final de la vida precisan ser aclarados, especialmente aquellos que suscitan debate entre las administraciones, los profesionales y los medios de comunicación. Las actitudes y opiniones de los médicos, quienes atienden al paciente y sus familiares al final de la vida, son clave para comprender la magnitud del problema. Existe cierto debate sobre las diferentes opciones para el alivio del sufrimiento. El SMA y la E se han puesto en marcha en algunos países, y en los de su entorno, especialmente en Europa y Estados Unidos, puede apreciarse inquietud social y política. Una de las principales dificultades ante la toma de decisiones es la falta de rigor científico en los debates, y la confusión establecida en algunos términos. Por ese motivo, la OMC publicó, en el año 2002, una revisión de la literatura sobre los términos ¿E y SMA¿ en los años 1993 a 2001 (OMC ). Desde entonces, el debate sobre ambos conceptos ha sido continuo, generando gran cantidad de publicaciones al respecto. En los últimos años, la literatura científica ha aportado definiciones, experiencias y casuística abundante relacionada con la E y el SMA. Las fuentes son muy diversas y el ritmo de publicación ha sido creciente. La revisión de la literatura, máxime sobre un concepto sometido constantemente al análisis ético, requiere, además de la valoración cuantitativa, un enfoque cualitativo. Esta tesis doctoral resultaría de utilidad para ampliar la RS publicada en 2002, actualizándola y sometiéndola a un análisis cuantitativo y cualitativo, así como para intentar discernir sobre las actitudes y opiniones de los médicos españoles y si existe confusión sobre los conceptos de E y SMA, como también de términos relacionados. Marcamos el año 2002, como punto de partida pues es en este año cuando tienen lugar en Europa una serie de cambios legales en países como Holanda y Bélgica, donde se asiste a la despenalización de la E y el SMA. El año 2002 marca el nuevo debate médico y social, y empiezan a aflorar publicaciones tanto de los defensores como de los detractores de la práctica de la E y SMA. Previamente en el estado de Oregón (EEUU), en 1997 se aprobó la Oregon Death with Dignity Act (ODDA) que permitió la asistencia médica al suicidio siempre y cuando se cumplieran una serie de requisitos . En Suiza la E continúa penalizada, pero no el auxilio al suicidio, aunque a diferencia de Holanda y Oregón, no necesariamente tiene que contar la asistencia del médico. Suiza cuenta con tres organizaciones voluntarias que prestan apoyo a las personas que solicitan la ayuda al suicidio, siendo DIGNITAS la que declara más casos de personas extranjeras que asisten para recibir ayuda. Desde 2002 estas organizaciones reciben un creciente aumento en tal número de peticiones. Así pues, para profundizar en el conocimiento sobre las Actitudes y Opiniones de los médicos ante la E y el SMA, iniciamos una RS de la literatura en el período comprendido entre 2002 y 2009, y un estudio cualitativo, a través de grupos focales de discusión, para analizar si las actitudes y opiniones son adaptables a nuestra realidad española

Tratado de la distribución de las aguas del río Turia, y del Tribunal de los Acequieros de la Huerta de Valencia

Incluye grab. en p. 1 y p.143: "Grabado por Tomas Rocafort en Valª 1831

Evolution of the gut microbiome following acute HIV-1 infection

Background: In rhesus macaques, simian immunodeficiency virus infection is followed by expansion of enteric viruses but has a limited impact on the gut bacteriome. To understand the longitudinal effects of HIV-1 infection on the human gut microbiota, we prospectively followed 49 Mozambican subjects diagnosed with recent HIV-1 infection (RHI) and 54 HIV-1-negative controls for 9–18 months and compared them with 98 chronically HIV-1- infected subjects treated with antiretrovirals (n = 27) or not (n = 71). Results: We show that RHI is followed by increased fecal adenovirus shedding, which persists during chronic HIV-1 infection and does not resolve with ART. Recent HIV-1 infection is also followed by transient non-HIV-specific changes in the gut bacterial richness and composition. Despite early resilience to change, an HIV-1-specific signature in the gut bacteriome—featuring depletion of Akkermansia, Anaerovibrio, Bifidobacterium, and Clostridium—previously associated with chronic inflammation, CD8+ T cell anergy, and metabolic disorders, can be eventually identified in chronically HIV-1-infected subjects. Conclusions: Recent HIV-1 infection is associated with increased fecal shedding of eukaryotic viruses, transient loss of bacterial taxonomic richness, and long-term reductions in microbial gene richness. An HIV-1-associated microbiome signature only becomes evident in chronically HIV-1-infected subjects

Low nadir CD4+ T-cell counts predict gut dysbiosis in HIV-1 infection

Human immunodeficiency virus (HIV)-1 infection causes severe gut and systemic immune damage, but its effects on the gut microbiome remain unclear. Previous shotgun metagenomic studies in HIV-negative subjects linked low-microbial gene counts (LGC) to gut dysbiosis in diseases featuring intestinal inflammation. Using a similar approach in 156 subjects with different HIV-1 phenotypes, we found a strong, independent, dose-effect association between nadir CD4+ T-cell counts and LGC. As in other diseases involving intestinal inflammation, the gut microbiomes of subjects with LGC were enriched in gram-negative Bacteroides, acetogenic bacteria and Proteobacteria, which are able to metabolize reactive oxygen and nitrogen species; and were depleted in oxygen-sensitive methanogenic archaea and sulfate-reducing bacteria. Interestingly, subjects with LGC also showed increased butyrate levels in direct fecal measurements, consistent with enrichment in Roseburia intestinalis despite reductions in other butyrate producers. The microbiomes of subjects with LGC were also enriched in bacterial virulence factors, as well as in genes associated with beta-lactam, lincosamide, tetracycline, and macrolide resistance. Thus, low nadir CD4+ T-cell counts, rather than HIV-1 serostatus per se, predict the presence of gut dysbiosis in HIV-1 infected subjects. Such dysbiosis does not display obvious HIV-specific features; instead, it shares many similarities with other diseases featuring gut inflammation.Fundació Glòria SolerFundació Catalunya-La PedreraGala SIDA 2015-2016Nit per la Recerca a la Catalunya Central 2015 editionPeople in Red-Barcelona 2016 editionRED de SIDA RD16/0025/0041ISCIIIEuropean Regional Develpment Fund (ERDF)Agencia de Gestio d´Ajuts Universitaris i de Recerca (AGAUR)Secretaria d´Universitats i Recerca del Departament d´Economia i Coneixement de la Generalitat de CatalunyaMinisterio de Economia y Competitividad. EspañaUniversidad de Whashingto

Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol

Introduction: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. Methods and analysis: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. Ethics and dissemination: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout

Low nadir CD4+ T-cell counts predict gut dysbiosis in HIV-1 infection

Human immunodeficiency virus (HIV)-1 infection causes severe gut and systemic immune damage, but its effects on the gut microbiome remain unclear. Previous shotgun metagenomic studies in HIV-negative subjects linked low-microbial gene counts (LGC) to gut dysbiosis in diseases featuring intestinal inflammation. Using a similar approach in 156 subjects with different HIV-1 phenotypes, we found a strong, independent, dose-effect association between nadir CD4+ T-cell counts and LGC. As in other diseases involving intestinal inflammation, the gut microbiomes of subjects with LGC were enriched in gram-negative Bacteroides, acetogenic bacteria and Proteobacteria, which are able to metabolize reactive oxygen and nitrogen species; and were depleted in oxygen-sensitive methanogenic archaea and sulfate-reducing bacteria. Interestingly, subjects with LGC also showed increased butyrate levels in direct fecal measurements, consistent with enrichment in Roseburia intestinalis despite reductions in other butyrate producers. The microbiomes of subjects with LGC were also enriched in bacterial virulence factors, as well as in genes associated with beta-lactam, lincosamide, tetracycline, and macrolide resistance. Thus, low nadir CD4+ T-cell counts, rather than HIV-1 serostatus per se, predict the presence of gut dysbiosis in HIV-1 infected subjects. Such dysbiosis does not display obvious HIV-specific features; instead, it shares many similarities with other diseases featuring gut inflammation