Analysis of the circumstances associated with death and predictors of mortality in Spanish adults with Down syndrome, 1997-2014.

OBJECTIVES: Characterise the circumstances associated with death during admission of adults with Down syndrome (DS) and to identify predictors of mortality. PATIENTS AND METHODS: Observational study based on data on all emergent admissions of adults with DS to hospitals of the Spanish National Health System between 1997 and 2014. We analysed epidemiological and clinical variables. RESULTS: We analysed admissions of 11,594 adults with DS, mean age 47 years. 1715 patients died (15%), being the highest mortality (35%) in individuals aged 50-59. A past medical history of cerebrovascular disease (aOR 2.95 [2.30-3.77]) or cancer (aOR 2.79 [2.07-3.75]), gross aspiration's admission (aOR 2.59 [2.20-3.04]), immobility (aOR 2.31 [1.46-3-62]), and readmission within 30 days (aOR 2.43 [2.06-2.86]) were identified as predictors of mortality. CONCLUSIONS: Adults with DS have a high in-hospital mortality rate. The main predictors of death were cerebrovascular disease, cancer, early readmission, and conditions commonly associated with advanced dementia.

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.

Narrative Review of Multidisciplinary Management of Central Nervous Involvement in Patients with HER2-Positive Metastatic Breast Cancer: Focus on Elderly Patients.

The tumor biology of human epidermal growth factor receptor 2 (HER2)-positive breast cancer (BC) promotes the development of central nervous system (CNS) metastases, with 25% of patients with HER2-positive BC developing CNS metastases. Furthermore, the incidence of HER2-positive BC brain metastases has increased in the last decades, likely because of the improved survival with targeted therapies and better detection methods. Brain metastases are detrimental to quality of life and survival and represent a challenging clinical problem, particularly in elderly women, who comprise a substantial proportion of patients diagnosed with BC and often have comorbidities or an age-related decline in organ function. Treatment options for patients with BC brain metastases include surgical resection, whole-brain radiation therapy, stereotactic radiosurgery, chemotherapy, and targeted agents. Ideally, local and systemic treatment decisions should be made by a multidisciplinary team, with input from several specialties, based on an individualized prognostic classification. In elderly patients with BC, additional age-associated conditions, such as geriatric syndromes or comorbidities, and the physiologic changes associated with aging, may impact their ability to tolerate cancer therapy and should be considered in the treatment decision-making process. This review describes the treatment options for elderly patients with HER2-positive BC and brain metastases, focusing on the importance of multidisciplinary management, the different points of view from the distinct disciplines, and the role of oncogeriatric and palliative care in this vulnerable patient group.

Consensus document on palliative care in cardiorenal patients.

There is an unmet need to create consensus documents on the management of cardiorenal patients since, due to the aging of the population and the rise of both pathologies, these patients are becoming more prevalent in daily clinical practice. Chronic kidney disease coexists in up to 40%-50% of patients with chronic heart failure cases. There have yet to be consensus documents on how to approach palliative care in cardiorenal patients. There are guidelines for patients with heart failure and chronic kidney disease separately, but they do not specifically address patients with concomitant heart failure and kidney disease. For this reason, our document includes experts from different specialties, who will not only address the justification of palliative care in cardiorenal patients but also how to identify this patient profile, the shared planning of their care, as well as knowledge of their trajectory and the palliative patient management both in the drugs that will help us control symptoms and in advanced measures. Dialysis and its different types will also be addressed, as palliative measures and when the decision to continue or not perform them could be considered. Finally, the psychosocial approach and adapted pharmacotherapy will be discussed.

Prevalence, Clinical Characteristics, and Management of Episodic Dyspnea in Advanced Lung Cancer Outpatients: A Multicenter Nationwide Study-The INSPIRA-DOS Study.

Background: Episodic dyspnea (ED) is a common problem in patients with advanced lung cancer (LC). However, the prevalence of ED and other related aspects in this patient population is not known. Objectives: To assess and describe the prevalence, clinical features, treatment, and risk factors for ED in outpatients with advanced LC. Design: Multicenter cross-sectional study. Subjects: Consecutive sample of adult outpatients with advanced LC. Measurements: We assessed background dyspnea (BD), the characteristics, triggers, and management of ED. Potential ED risk factors were assessed through multivariate logistic regression. Results: A total of 366 patients were surveyed. Overall, the prevalence of ED was 31.9% (90% in patients reporting BD). Patients reported a median of one episode per day (interquartile range [IQR]: 1-2), with a median intensity of 7/10 (IQR: 5-8.25). ED triggers were identified in 89.9% of patients. ED was significantly associated with chronic obstructive pulmonary disease (p = 0.011), pulmonary vascular disease (p = 0.003), cachexia (p = 0.002), and palliative care (p < 0.001). Continuous oxygen use was associated with higher risk of ED (odds ratio: 9.89; p < 0.001). Opioids were used by 44% patients with ED. Conclusions: ED is highly prevalent and severe in outpatients with advanced LC experiencing BD. The association between intrathoracic comorbidities and oxygen therapy points to alveolar oxygen exchange failure having a potential etiopathogenic role in ED in this population. Further studies are needed to better characterize ED in LC to better inform treatments and trial protocols.

Cuestionario realizado para comprender los hábitos de prescripción de analgésicos opioides en la Comunidad de Madrid (España) / Questionnaire made to understand the opioid analgesics prescription habits in the community of Madrid (Spain)

Objetivo: El dolor es el síntoma más temido e incapacitante para los enfermos con cáncer. La piedra angular del tratamiento son los opioides. El objetivo de este trabajo fue relacionar el consumo de opioides existente en la Comunidad de Madrid (CM) con los hábitos de prescripción expresados por los médicos de Atención Primaria (AP) y Cuidados Paliativos (CP). Diseño: Se diseñó un cuestionario de hábitos de prescripción de opioides. El muestreo fue no probabilístico consecutivo. Emplazamiento: AP y recursos específicos de CP de la CM. Participantes: La población a estudio abarcó a todos los médicos de familia que trabajaban en AP en el Servicio Madrileño de Salud y todos los médicos que trabajaban en algún recurso específico de CP tanto domiciliario como hospitalario en la CM de la red sanitaria pública y privada/concertada. Mediciones principales: Se valoró el opioide mayor y menor más utilizado en dolor oncológico y no oncológico moderado-severo, la vía de administración de elección, la seguridad en el uso de opioides en el tratamiento del dolor y la guía de práctica clínica preferida de consulta. Resultados: El cuestionario fue contestado por 840 médicos de familia (20%) y 56 médicos paliativistas (45%). Para el tratamiento del dolor oncológico moderado-severo en ambos grupos de profesionales la elección fue la morfina; sin embargo, en dolor no oncológico para AP fueron el fentanilo y la morfina para los paliativistas. Respecto a la vía de administración, el 70% de los médicos de familia y 87% de los paliativistas manifestaban que la vía oral era de elección, frente a un 27% en AP y un 5% en CP que preferían la transdérmica. Los médicos de AP puntuaron su habilidad para la utilización de opioides como media (4-7/10), mientras los paliativistas la consideraban como alta 8-10/10).(AU)

Objective: Pain is the fearest and disabling symptom for cancer patients. The cornerstone of treatment is opioid analgesics. The objective of this research was to relate the opioid consumption existing in the Community of Madrid (CM) with the prescription habits expressed by the Primary Care (PrC) and Palliative Care (PalC) physicians. Design: An opioid prescription habits questionnaire was designed. Sampling was consecutive non-probability. Site: PrC and specific PalC resources in the CM. Participants: The study population included all the family doctors who worked in PrC in the Madrid Public Health Service and all the physicians who worked in some specific PalC resources, both home-based teams and supportive hospital teams in the CM of the public and private/concerted health network services. Main measurements: We asked about the strong and weak opioids most used in moderate-severe oncological and non-oncological pain, the preferred administration route, the safety in the use of opioids in the treatment of pain and the preferred clinical practice guidelines. Results: The questionnaire was answered by 840 PrC physicians (20%) and 56 PalC physicians (45%). For the treatment of moderate-severe cancer pain in both groups of professionals, the first choice was morphine; however, in non-cancer pain for PrC it was fentanyl and morphine for PalC professionals. Regarding the route of administration, 70% of family doctors and 87% of PalC physicians stated that the oral route was the first choice, compared to 27% in PrC and 5% in PalC who preferred the transdermal route.(AU)

[Questionnaire made to understand the opioid analgesics prescription habits in the community of Madrid (Spain)]. / Cuestionario realizado para comprender los hábitos de prescripción de analgésicos opioides en la Comunidad de Madrid (España).

OBJECTIVE: Pain is the fearest and disabling symptom for cancer patients. The cornerstone of treatment is opioid analgesics. The objective of this research was to relate the opioid consumption existing in the Community of Madrid (CM) with the prescription habits expressed by the Primary Care (PrC) and Palliative Care (PalC) physicians. DESIGN: An opioid prescription habits questionnaire was designed. Sampling was consecutive non-probability. SITE: PrC and specific PalC resources in the CM. PARTICIPANTS: The study population included all the family doctors who worked in PrC in the Madrid Public Health Service and all the physicians who worked in some specific PalC resources, both home-based teams and supportive hospital teams in the CM of the public and private/concerted health network services. MAIN MEASUREMENTS: We asked about the strong and weak opioids most used in moderate-severe oncological and non-oncological pain, the preferred administration route, the safety in the use of opioids in the treatment of pain and the preferred clinical practice guidelines. RESULTS: The questionnaire was answered by 840 PrC physicians (20%) and 56 PalC physicians (45%). For the treatment of moderate-severe cancer pain in both groups of professionals, the first choice was morphine; however, in non-cancer pain for PrC it was fentanyl and morphine for PalC professionals. Regarding the route of administration, 70% of family doctors and 87% of PalC physicians stated that the oral route was the first choice, compared to 27% in PrC and 5% in PalC who preferred the transdermal route. The PrC physicians rated their ability to use opioids as average (4-7/10), while the palliativists considered it as high (8-10/10). In PrC, they declared that they knew, above all, the European Association for Palliative Care (EAPC) and National Institute for Health and Care Excellence (NICE) guidelines, although the largest number answered that they trusted their experience. PalC physicians preferred to use the EAPC guide. CONCLUSIONS: There is a clear disagreement between the actual consumption of opioids and the prescribing habits manifested by family doctors, as well as a false certainty in prescribing these drugs.

Switching Ratio from Parenteral to Oral Methadone 1:1.2 Is Safer Compared with Ratio 1:2 in Patients with Controlled Cancer Pain: A Multicenter Randomized-Controlled Trial (RATIOMTD-010810).

Background: The most commonly used switching ratio from parenteral to oral methadone is 1:2. Methadone is highly bioavailable and a lower ratio might result in similar analgesia with less toxicity. Objective: To compare success and side effects with two ratios from parenteral to oral methadone: 1:2 versus 1:1.2 in hospitalized patients with cancer pain. Design: A multicenter double-blind randomized clinical trial. Settings/Particiants: Inpatients with well-controlled cancer pain with parenteral methadone requiring rotation to the oral route. Measurements: Outcomes included pain intensity (Brief Inventory Pain), opioid toxicity (Common Toxicology Criteria for Adverse Events), and methadone dose. Success was defined as no toxicity with good pain control at 72 hours. Results: Thirty-nine of forty-four randomized patients were evaluable: 21 in ratio 1:2 and 18 in ratio 1:1.2. Seventy-one percent male. Median age 65 years. No significant differences in basal clinical characteristics between both groups. Median methadone dose pre/post switching was 24.5 mg ±13.5 and 49 mg ±27.3 for ratio 1:2, versus 23.3 mg ±9.4 (p: not significant) and 28 mg ±11.3 (p < 0.01) for ratio 1:1.2. Pain was well controlled without differences between both ratios. Drowsiness at day +1 (p < 0.017) and myoclonus at day +3 (p < 0.019) were more prevalent in group 1:2. Success was observed in 12 patients in ratio 1:2 versus 18 in ratio 1:1.2 (p < 0.001). Methadone side effects were observed in 12 patients in ratio 1:2 (mainly neurotoxicity symptoms) versus 2 in ratio 1:1.2 (p < 0.005). Conclusion: Ratio 1:1.2 when changing from parenteral to oral methadone resulted in lower toxicity and no difference in analgesia. More conservative dose adjustment during methadone route change should be considered. European Clinical Trials Register (EudraCT No. 2010-024092-39).

Breakthrough cancer pain treatment in Spain: physicians' perception of current opioids utilization and prescription.

Objectives: Multiple reasons for suboptimal treatment of breakthrough cancer pain (BTcP) have been reported in the literature. We aimed to ascertain the perception of physicians on the potential inappropriate use and prescription of rapid-onset opioids (ROOs) for breakthrough cancer pain (BTcP) and the causes thereof.Methods: Observational study based on an online survey addressed to doctors from different specialties (radiation oncology, medical oncology, anesthesia, palliative care and general practitioners) with experience in the management of BTcP in the Spanish public health setting.Results: A total of 114 eligible specialists mainly from radiation oncology (37.7%), medical oncology (24.6%) and pain units (18.4%) participated in the study. Most agreed on important aspects of BTcP management, such as their preference for ROOs or the need for early follow-up after treatment initiation. However, their answers revealed a lack of standardization of BTcP diagnosis. Half of respondents believed that their BTcP patients might misuse ROOs. Physicians polled believed that lack of training in pain management (71.9%) and inadequate BTcP diagnosis and evaluation (66.7%) were the greatest obstacles for prescribing opioids. Specialists also thought that they do not provide the necessary information to patients (51.8%) and caregivers (57.9%) to guarantee the correct use of these drugs.Conclusions: These results are of utmost importance as they highlight the need to increase physicians' awareness of BTcP and its management and the need to improve communication with patients and their caregivers. Our findings also indicate the need for future research on the possible misuse of opioids in BTcP patients and its causes.

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.

Planificación anticipada de decisiones: un instrumento clínico esencial para la calidad asistencial / Advance care planning: an essential clinical instrument for healthcare quality

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Factores relacionados con el proceso de información en pacientes con cáncer avanzado / Factors related to the information process in patients with advanced cancer

OBJETIVO: Nuestro objetivo fue determinar el grado de conocimiento de su enfermedad que tienen los pacientes con cáncer avanzado atendidos por un Equipo de Soporte Paliativo Hospitalario (ESPH) en un hospital terciario y los factores relacionados con el grado de conocimiento. MÉTODO: Se realizó un estudio observacional prospectivo con una cohorte de pacientes valorados por un ESPH que cumplían los siguientes criterios de inclusión: mayor de 18 años, buena comprensión y expresión del castellano, PPS = 30, ausencia de deterioro cognitivo que impidiera la adecuada realización de las entrevistas y fi rma el consentimiento informado. Se realizó una entrevista semiestructurada y se recogieron datos clínicos y asistenciales de la historia clínica. Se desarrolló una escala con el objetivo de evaluar el grado de conocimiento sobre el proceso de enfermedad del paciente en situación de enfermedad oncológica avanzada. La puntuación podía variar entre 0 y 4, asignando el valor de 1 o 0 al conocimiento sobre los diferentes aspectos de la enfermedad. Se realizó una estadística descriptiva básica expresándose los datos de las variables cuantitativas como media (desviación estándar) y mediana (rango intercuartílico) y los datos de las variables cualitativas como proporción. Para estudiar la asociación de variables cualitativas se utilizó el test de Chi-cuadrado o el test exacto de Fisher y para la comparación de medias de grupos independientes, el test de U de Mann Whitney. Para el análisis de estos datos se utilizó la versión 15 del programa SPSS. RESULTADOS: Se realizaron 50 entrevistas. El 82 % de los pacientes estaba informado correctamente del diagnóstico de la enfermedad que padecían y el 76 % sabía que era una enfermedad grave, aunque el 47 % conocía que el objetivo del tratamiento no era la curación y solo el 39 % que no se podían curar. En el análisis de la relación de los factores estudiados con el grado de conocimiento del proceso de enfermedad, se encontraron diferencias clínicamente relevantes (diferencias de = 0,8 puntos en la escala) y estadísticamente significativas respecto al nivel de estudios (bajo: 2,1 ± 1,3 vs. alto: 3,3 ± 0,9; p = 0,03) y al número de visitas a urgencias en los 6 meses previos (= 2 visitas 1,9 ± 1,2 vs. > 2 visitas 2,8 ± 1,3; p = 0,02). CONCLUSIONES: En esta cohorte de pacientes hay un escaso conocimiento del pronóstico de la enfermedad y, por lo tanto, resulta difícil que puedan participar en decisiones importantes sobre el final de su vida. Aunque estos datos no son extrapolables, sí sugieren la necesidad de un mayor esfuerzo por parte de los profesionales en valorar la necesidad de información de los pacientes sobre su proceso de enfermedad. Por otro lado, el estudio pone de manifiesto la necesidad de desarrollar una herramienta que permita estandarizar la valoración y el registro del grado de conocimiento sobre el proceso de enfermedad. Se propone una escala de grado de conocimiento del proceso de enfermedad que podría permitir valorar el conocimiento sobre diagnóstico, gravedad, objetivo de tratamiento y conciencia de final de vida. Se precisan futuros estudios que permitan valorar su utilidad en la práctica clínica y en la realización de estudios sobre información

OBJECTIVE: Our goal was to determine the degree of knowledge advanced cancer patients have about their condition while being cared for by a Hospital Palliative Care Team (HPCT) in a tertiary referral hospital, and the factors associated therewith. METHODS: A prospective observational study was carried out in a cohort of patients cared for by an HPCT. All of them complied with the following inclusion criteria: over 18 years of age, good understanding and use of the Spanish language, PPS = 30, absence of cognitive impairment that could potentially hamper the interviewing process, and signing of an informed consent form. A semi-structured interview was performed during which medical history data were obtained. A scale was developed to assess degree of knowledge about their disease in patients with advanced cancer. Scores ranged from 0 to 4, with 1 or 0 being assigned to different aspects of the condition involved. Basic descriptive statistics were used to express quantitative variables as mean (standard deviation) and median (interquartile range) values, and qualitative variables as proportions. In order to study the association of qualitative variables the Chi-squared or Fisher's exact tests were used; the Mann-Whitney U-test was used to compare mean values for independent groups. The analysis was performed using the SPSS V.15 package. RESULTS: Fifty interviews were performed; 82% of subjects were correctly informed about their illness, and 76% knew it was a serious disease, although only 47% of patients knew that the goal of their treatment was not total recovery, and only 39% were aware that they could not be cured. After analyzing the relationship between the factors under study and the degree of knowledge about the course of disease, clinically relevant differences were found (differences = 0.8 points within the scale), which were statistically significant with respect to educational background (low: 2.1 ± 1.3 vs. high: 3.3 ± 0.9; p = 0.03) and number of visits to the emergency room over the previous six months (= 2 visits, 1.9 ± 1.2 vs > 2 visits, 2.8 ± 1.3; p = 0.02). CONCLUSIONS: In this cohort of patients knowledge was poor about disease prognosis; consequently, patients could hardly take part in the important decisions required about the end of their lives. Although these data may not be extrapolated, they do suggest the need for greater efforts by professionals in assessing the need for information patients have about their disease. Also, the study highlights the need for developing a tool to help standardize the process of assessing and recording degree of disease knowledge. A disease knowledge scale is proposed to assess knowledge regarding diagnosis, severity, treatment goals, and end-of-life awareness. Further studies are needed to evaluate its usefulness for clinical practice, and to help carry out informative studies

Breaking Barriers: Prospective Study of a Cohort of Advanced Chronic Obstructive Pulmonary Disease Patients To Describe Their Survival and End-of-Life Palliative Care Requirements.

BACKGROUND AND AIM: Consensus has been reached on the need to integrate palliative care in the follow-up examinations of chronic obstructive pulmonary disease (COPD) patients. We analyzed the survival from the initiation of follow-up by a palliative home care team (PHCT) and described the needs and end-of-life process. SETTING AND DESIGN: This study was a prospective observational cohort study of advanced COPD patients referred to a PHCT. Sociodemographic variables, survival from the start date of follow-up using the Kaplan-Meier model, health resource consumption, perceived quality of life, main symptomatology, opioid use, and advanced care planning (ACP) were analyzed. RESULTS: Sixty patients were included. The median survival was 8.3 months. Forty-two patients died at the end of the study (85% at home or in palliative care units). The most frequent cause of death was respiratory failure in 39 patients (93%), with 29 of these patients requiring sedation (69%). Dyspnea at rest, with an average of 5 (standard deviation [SD] 2) points, was the main symptom. Fifty-five patients (91%) required opioids for symptom control. The median score in the St. George's Respiratory Questionnaire was 72 (SD 13). The mean number of visits by the home team was 7 (SD 6.5). The mean number of admissions during the monitoring period was 1.5 (SD 0.15). CONCLUSIONS: The characteristics of the cohort appear suitable for a PHCT. The follow-up care provided by our multidisciplinary unit decreased the number of hospitalizations, favored the development of ACP, and enabled death at home or in palliative care units.

Comparación directa de los costes sanitarios en los 2últimos meses de vida en pacientes oncológicos a partir de certificados de defunción en un área periurbana según reciban o no atención en su domicilio por un equipo de cuidados paliativos / Direct comparison of health costs in the last 2months of life of oncological patients from death certificates in a peri-urban area, according to whether or not they had received care from a palliative home care team

OBJETIVO: Comparar de manera directa los costes sanitarios que supone la atención en los 2últimos meses de vida de los pacientes con enfermedad oncológica avanzada a partir de los certificados de defunción en una zona metropolitana de Madrid, según reciban o no seguimiento en su domicilio por un Equipo de Soporte de Atención Paliativa Domiciliaria (ESAPD). METODOLOGÍA: DISEÑO: análisis de costes directos con base poblacional comparando 2opciones de atención de pacientes oncológicos en los 2últimos meses de vida: seguimiento habitual, seguimiento por ESAPD. Ámbito: el ESAPD está formado por 2médicos y 2enfermeras, y atienden una población de 350.000 habitantes de un área metropolitana de Madrid. Tamaño muestral y muestreo: 226 pacientes. A partir de los certificados de defunción se incluyó a todos los pacientes mayores de 18 años, fallecidos por cáncer durante el año 2005, en el área metropolitana de Madrid que atiende dicho ESAPD. Variables a partir de los certificados de defunción sociodemográficas y clínicas: edad, sexo, estado civil, localización del tumor y fecha del fallecimiento. A partir de los registros de los hospitales públicos: número de ingresos hospitalarios, duración y visitas a urgencias y a partir de la base datos ESAPD: seguimiento o no por el ESAPD. Análisis de costes: para el cálculo de los costes empleados de ingresos por urgencias o estancia hospitalaria se tomaron los precios públicos oficiales de la base de datos Oblikue actualizados con el IPC de medicinas a 2015. Análisis estadístico: se han descrito las variables cualitativas con frecuencias y porcentajes, y las variables cuantitativas con media, mediana y desviación típica. Para la comparación entre 2 variables se usó el test t de Student, el test de la chi al cuadrado y la Tau-c de Kendall. RESULTADOS: N: 226, edad media fue de 68,0 (14,0) años, con un rango de 23 a 94 años, un 65,9% fueron varones, solteros 16 (7,1%), casado 148 (65,5%), viudo 55 (25,3%) y separado 7 (3,1%). Tipo de tumor: hematológico 21, respiratorio 61, mama 14, genitourinario 19 y digestivo 69. Pacientes fallecidos en el hospital 5 (13,5%) vs.133 (70,4%), en domicilio 25 (67,5%) vs.22 (11,6%), en unidades de cuidados paliativos 5 (13,5%) vs.21 (11,1%) según hayan recibido o no seguimiento por ESAPD, respectivamente, p < 0,005. Número de ingresos hospitalarios: ningún ingreso 22 (59%) vs.54 (28,6%), un ingreso 12 (32,4) vs.98 (51,9%) y 2o más ingresos 3 (8,1%) vs.37 (19,6%) según hayan recibido o no seguimiento por ESAPD, respectivamente, p < 0,001. La media en el número de días de ingresos fue de 7,5 vs.16,5 según hubieran recibido o no seguimiento por ESAPD, respectivamente, p < 0,001. El coste medio en euros por paciente fue de 3.158, IC 1.626.7-4689,2, rango máximo de 15.186 vs.6.941, IC 5.919-7.963,1) y rango máximo de 26.153, p = 0,002, según hubieran recibido o no seguimiento por ESAPD, respectivamente. CONCLUSIONES: Se observa una disminución muy significativa del gasto por paciente en aquellos que son seguidos por un equipo domiciliario de cuidados paliativos. Esta disminución está asociada principalmente al menor número de ingresos y estancias hospitalarias en el grupo de pacientes que fueron seguidos por un equipo de cuidados paliativos

PURPOSE: direct comparison of the health costs of care in the last 2 months of life, of patients with advanced oncological illness, from death certificates, in a metropolitan area in Madrid, depending on whether or not they had been home monitored by a Palliative Home Care Team (PHCT). Methods: Design population-based direct costs analysis, comparing 2care options for oncological patients in the last 2months of life: standard monitoring vs. PHCT monitoring. Setting: The PHCT is formed by 2physicians and 2nurses, attending 350 000 inhabitants of a metropolitan area of Madrid. Sample size and sampling: 226 patients. From death certificates, all patients older than 18, who died of cancer during 2005, in the Madrid metropolitan area attended by the abovementioned PHCT, were included. Variables sociodemographic and clinical variables from death certificates: age, sex, marital status, tumour location, date of death. From the public hospitals' registries: number of hospital admissions, visits to emergency room and their length. And from the PHCT database: PHCT monitoring. Costs analysis: the official public prices of the Oblikue database were used to calculate the costs of emergency admissions and/or hospital stays, updated with the 2015 medicines IPC. Statistical analysis: The qualitative variables were described with frequency and percentage, and the quantitative variables with mean, median and standard deviation. For the comparison between 2variables the T-Student test, the Chi-square test and the Kendall c-Tau were used. Results: N: 226. Mean age was 68.0 (14.0) with a range from 23 to 94 years old, 65.9% were male, 16 single (7.1%), 148 married (65.5%), 55 widowed (25.3%) and 7 separated (3.1%). Tumour type: 21 haematological, 61 respiratory, 14 breast, 19 genitourinary, 69 digestive. Patients who died in hospital 5 (13.5%) vs. 133 (70.4%), at home 25 (67.5%) vs. 22 (11.6%), in palliative care units 5 (13.5%) vs. 21 (11.1%) according to whether or not they had been monitored by PHCT respectively, P<.005. Number of hospital admissions: no admission 22 (59%) vs. 54(28.6%), one admission 12(32.4) vs. 98(51.9%) and 2or more admissions 3(8.1%) vs. 37(19.6%), according to whether or not they had been monitored by PHCT respectively, P<.001. The mean number of admission days was 7.5 vs. 16.5, according to whether or not they had been monitored by PHCT respectively, P<.001. The mean cost in euros per patient was 3158, CI (1626.7-4689.2), maximum range 15186 vs. 6941, CI (5919-7963.1) and maximum range 26153, P=.002, according to whether or not they had been monitored by PHCT respectively. Conclusions: A significant reduction in the expense per patient, in those monitored by a PCHT is observed. This reduction is mainly associated with a lower number of admissions and hospital stays in the group of patients that were monitored by a palliative areteam

Correction: An International Consensus Definition of the Wish to Hasten Death and Its Related Factors.

[This corrects the article DOI: 10.1371/journal.pone.0146184.].

Atención al final de la vida en los pacientes con fibrosis pulmonar idiopática / End of life care in pulmonary fibrosis

OBJETIVOS: Describir el final de vida de los pacientes con fibrosis pulmonar idiopática (FPI) desde la experiencia del seguimiento de un Equipo de Soporte de Atención Paliativa Domiciliario. (ESAPD). METODOLOGÍA: Estudio descriptivo retrospectivo de pacientes con FPI atendidos por un ESAPD en los años 2011, 2012 y 2013. Analizamos: variables sociodemográficas, nivel de información, situación funcional, tratamientos recibidos, control de síntomas, situación de últimos días, lugar de fallecimiento y carga asistencial. Análisis de datos con SPSS®. RESULTADOS: Se atendieron 6 pacientes con FPI. Edad media de 74 años, cuatro hombres. Al inicio: Barthel de 50 (DS 30) y palliative performance score de 50 (DS 4), con un índice de comorbilidad de Charlson de 1,5 (DS 1,2). Los síntomas más importantes durante el seguimiento fueron la disnea de mínimos esfuerzos (69% al inicio, 100% en la última semana) y los síntomas de hipercapnia (16% al inicio y 50% en la última semana). Cinco pacientes tenían información diagnóstica y pronóstica. Consumían una media de 10 fármacos. Un 66% fármacos inhalados y un 100% esteroides, opioides y OCD con sistema de alto flujo. Cuatro pacientes precisaron vía subcutánea y administración de morfina (dosis media 25 mg/día). El lugar de fallecimiento fue el domicilio (50%) y Unidades de Cuidados Paliativos (50%). La mediana de días de seguimiento por ESAPD fueron 18 (4-210), con una media de 5 (DS 4) visitas por ESAPD. La mediana de supervivencia desde el diagnóstico fue de 11,5 meses (3-60). CONCLUSIONES: Los pacientes con FPI presentan una importante disnea, muy limitante que progresa hasta hacerse de reposo, lo que justificaría un seguimiento domiciliario estrecho por un ESAPD

AIM: To describe the clinical course of patients with advanced idiopathic pulmonary fibrosis (IPF) followed up by a Palliative Home Care Supportive Team (PHCST). METHODS: Observational, retrospective study of patients with IPF who were followed up by a PHCST during 2011,2012 and 2013. We analyzed: demographic characteristics, information level, performance status,, treatments, symptom control, last day's situation, place of death, and care burden. Data were analyzed using SPSS®. RESULTS: A total of 6 patients were analyzed, with a mean age of 74, 4 males. At baseline: Barthel score 50 (SD 30), palliative performance score (PPS) 50 (SD 4), and Charlson Comorbidity Index 1.5 (SD 1.2). The main problems reported by patients were dyspnea with minimal activity (69% at baseline, 100% in the last week) and clinical signs of hypercapnia (16% at baseline, 50% in the last week). Five patients were informed about diagnosis and the prognosis. Patients were taking an average of 10 drugs, with 66% used inhalation drugs, and 100% used corticosteroids, opioids and high flow oxygen delivery. Four patients used subcutaneous route and morphine administration (mean dose of 25 mg/day). The place of death was at home (50%), and in a palliative care unit (50%). The median PHCST follow-up time was 18 days (4-210) with a mean of 5 (SD 4) PHCST visits during this period. The median survival time between diagnosis and death was 11.5 months (3-60). CONCLUSIONS: Patients with IPF exhibit a very important dyspnea, very limiting that progresses even at rest, which would justify a narrow home monitoring by PHCST

HOLD study (Home care Obstructive Lung Disease): natural history of patients with advanced COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fourth cause of death in western countries. Its final stage has clearly been forgotten by medical research in recent years. There exists consensus regarding the need to integrate palliative care in assisting these patients, but the difficulty in establishing a prognosis for the disease, establishing limits for life support measures, the lack of information about the disease's natural course and ignorance as to the most effective health-care structure for these patients' palliative treatment may be responsible for their late inclusion or non-inclusion in specific programmes. The main purpose of this work is to find out the natural background of patients with stage IV COPD and the main prognostic factors that influence these patients' survival. METHODS/DESIGN: Prospective observational study of a home patient cohort with stage IV COPD sent from Neumology consultations and Palliative Care Unit in La Paz Hospital in Madrid and Primary Care Health Centres in the area to the palliative care home support team. The goal is to study socio-demographic variables, prognosis, nutritional status, use of health resources, perceived quality of life, functionality, main symptomatology, use and effectiveness of opioids, adherence to treatment, prognostic information regarding the disease, information given by professionals, advance directives, social backup requirements and overburden level of the main caregiver. DISCUSSION: The HOLD study is a project aimed at finding out the prognostic factors and evolution of the disease COPD in its most advanced stage. The final goal is to improve the health and quality of life, in a personalised, integral way up to end of life and explore and foster communication with patients, as well as their participation and collaboration in decision-taking. The HOLD study can help us better understand what these patients' real palliative and care needs are, in order to more efficiently organise their treatment at end of life.

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors.

BACKGROUND: The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. METHODS: Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. FINDINGS: All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. CONCLUSIONS: This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.

Invasive techniques for pain management in palliative care: a single center experience.

UNLABELLED: To achieve a successful pain control, interventional techniques are required in approximately 15% of the patients admitted to the Palliative Care Service (PCS). OBJECTIVES: To evaluate the frequency and effectiveness of the invasive procedures performed in the PCS of our health area. Other matters studied included complications associated with these procedures, the effects on morphine consumption, and functional status, survival rate, as well as the type and location of pain. METHODS: A descriptive, observational, retrospective study was performed between January 2009 and December 2011. Patients included were considered difficult to manage and required the assistance of the PCS of the University Hospital La Paz (Madrid). RESULTS: Patients were divided into 3 groups according to the technique used: sympathetic blocks (group S), epidural catheters (group C), and series of plexus, peripheral nerve, or epidural infiltrations (group I). Ninety-four procedures in 45 patients were performed (3.6% of patients admitted by the PCS). The average mean value of pain intensity before and after procedures decreased significantly (8.6 vs. 3.1, respectively, P < 0.01). The need for strong opioids was reduced (275.5 mg/day previously and 212.8 mg/day after the technique, P < 0.01). The overall complication rate was 16%. CONCLUSION: The analgesic efficacy of these techniques has been adequate in all groups. Patients who required epidural catheters had a higher rate of complications.

First Spanish version of the Memorial Delirium Assessment Scale: psychometric properties, responsiveness, and factor loadings.

CONTEXT: The Memorial Delirium Assessment Scale (MDAS) is a reliable and validated instrument with which to assess delirium. However, MDAS responsiveness has only been investigated in an indirect way. Also, neurobehavioral and global cognitive factors seem to be the MDAS main factor loads. OBJECTIVES: The primary objective of this study was to evaluate MDAS responsiveness and analyze individual factors on this scale. The secondary objective was to confirm concurrent validity and reliability of the Spanish version of the MDAS. METHODS: The translation-back translation method was used to obtain the Spanish version of the MDAS. Delirium diagnosis was determined by the clinical Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision criteria and with the Confusion Assessment Method. Responsiveness and factor loadings were determined with the Delirium Rating Scale-Revised-98, the Mini-Mental State Examination (MMSE), and the MDAS at baseline (0 hours) and at 72 hours. RESULTS: Variation in the scores of the Delirium Rating Scale-Revised-98 shows a correlation of r = 0.93, with variation in MDAS scores at P < 0.001. Variation in MMSE scores shows a correlation of r = -0.84, with variation in MDAS scores at P = 0.015. Factor I, neurobehavioral (reduced awareness, reduced attention, perceptual disturbance, delusions, altered psychomotor activity, and sleep-wake cycle disturbance), correlated moderately with the MMSE at -0.56. Factor II, global cognitive (disorientation, short-term memory impairment, impaired digit span, and disorganized thinking), correlated strongly with the MMSE at -0.81. Factor II was significantly more reliable than Factor I, rho = 0.7, P = 0.01. CONCLUSION: The high responsiveness confirms the value of the MDAS for ongoing delirium assessment. Two differentiated factor loadings point to a potential future need for MDAS subscales.