Perceptions and experiences of onco-haematology professionals in relation to advance care planning: a qualitative study.

PURPOSE: The objective of this study is to identify the beliefs, values, perceptions, and experiences of medical oncology, radiation oncology, and clinical haematology professionals about the advance care planning process. METHODS: Qualitative exploratory study. There were four focus groups with 14 nurses and 12 physicians (eight medical oncology, one radiation oncology, three haematology). A reflexive thematic analysis of the data obtained was performed. RESULTS: We identified 20 thematic categories, which we grouped into four themes: lack of knowledge about advance care planning; perception of the advance care planning process: knowledge acquired from practice; barriers and facilitators for the implementation of advance care planning; and communication as a key aspect of advance care planning. CONCLUSIONS: The participants valued advance care planning as an early intervention tool that promotes autonomy. They perceived difficulties in approaching planning due to lack of knowledge, training, and time. They identified the therapeutic relationship with the person, the participation of the person's loved ones, teamwork, and communication skills as essential to ensuring the quality of the process. Finally, they recognised that palliative care professionals provide added value in supporting planning processes.

COVID-19 among workers of a comprehensive cancer centre between first and second epidemic waves (2020): a seroprevalence study in Catalonia, Spain.

OBJECTIVES: Patients with cancer are at higher risk for severe COVID-19 infection. COVID-19 surveillance of workers in oncological centres is crucial to assess infection burden and prevent transmission. We estimate the SARS-CoV-2 seroprevalence among healthcare workers (HCWs) of a comprehensive cancer centre in Catalonia, Spain, and analyse its association with sociodemographic characteristics, exposure factors and behaviours. DESIGN: Cross-sectional study (21 May 2020-26 June 2020). SETTING: A comprehensive cancer centre (Institut Català d'Oncologia) in Catalonia, Spain. PARTICIPANTS: All HCWs (N=1969) were invited to complete an online self-administered epidemiological survey and provide a blood sample for SARS-CoV-2 antibodies detection. PRIMARY OUTCOME MEASURE: Prevalence (%) and 95% CIs of seropositivity together with adjusted prevalence ratios (aPR) and 95% CI were estimated. RESULTS: A total of 1266 HCWs filled the survey (participation rate: 64.0%) and 1238 underwent serological testing (97.8%). The median age was 43.7 years (p25-p75: 34.8-51.0 years), 76.0% were female, 52.0% were nursing or medical staff and 79.0% worked on-site during the pandemic period. SARS-CoV-2 seroprevalence was 8.9% (95% CI 7.44% to 10.63%), with no differences by age and sex. No significant differences in terms of seroprevalence were observed between onsite workers and teleworkers. Seropositivity was associated with living with a person with COVID-19 (aPR 3.86, 95% CI 2.49 to 5.98). Among on-site workers, seropositive participants were twofold more likely to be nursing or medical staff. Nursing and medical staff working in a COVID-19 area showed a higher seroprevalence than other staff (aPR 2.45, 95% CI 1.08 to 5.52). CONCLUSIONS: At the end of the first wave of the pandemic in Spain, SARS-CoV-2 seroprevalence among Institut Català d'Oncologia HCW was lower than the reported in other Spanish hospitals. The main risk factors were sharing household with infected people and contact with COVID-19 patients and colleagues. Strengthening preventive measures and health education among HCW is fundamental.

Organización paliativa durante la pandemia de la COVID-19 y propuestas para la adaptación de los servicios y programas de cuidados paliativos y de atención psicosocial ante la posibilidad de reactivación de la pandemia y época pos-COVID-19 / Palliative organization during the COVID-19 pandemic and proposals to adapt palliative and psychosocial care services and programs in the face of potential pandemic reactivation and the post-COVID-19 world

INTRODUCCIÓN: La irrupción brusca e intensa de la COVID-19 en nuestra sociedad ha provocado un elevado sufrimiento en pacientes y familias, así como una elevada presión en profesionales y servicios. Sus peculiares características han hecho emerger la atención paliativa como uno de los ejes principales de su abordaje. Este hecho ha provocado una reestructuración de equipos y servicios de cuidados paliativos y atención psicosocial. OBJETIVOS: Describir la respuesta inicial de diversos equipos de cuidados paliativos y atención psicosocial ante la pandemia por la COVID-19, así como elaborar una serie de recomendaciones ante la posibilidad de una nueva reactivación de la pandemia. MATERIAL Y MÉTODOS: Tras una revisión narrativa de la literatura se elaboró un cuestionario con los elementos organizativos más destacados. Este cuestionario se envió a diversos expertos y referentes en cuidados paliativos en España. En una segunda fase, y tras el análisis de los resultados del cuestionario, se elaboraron una serie de recomendaciones. RESULTADOS: Los elementos destacados de la revisión de la literatura fueron: 1) preparación y protección de equipos; 2) presencia de los cuidados paliativos en el sistema; 3) intervención en pacientes agudos; 4) desarrollo de planes asistenciales; 5) provisión de medicación esencial; 6) voluntariado; 7) docencia, y 8) participación de la sociedad. Respondieron 26 de los 31 expertos. Los resultados muestran una respuesta organizativa variable, desde implicación y liderazgo hasta reducción de estructuras, de acuerdo con su posición previa en el sistema. Dentro de las propuestas para afrontar una nueva ola de la pandemia se encuentran: 1) evaluación del estado de los equipos; 2) valorar el grado de adaptación y respuesta a la crisis; 3) conocer las nuevas necesidades; 4) promover una intervención proactiva; y 5) reprogramar los actuales planes de cuidados paliativos. CONCLUSIONES: El presente trabajo muestra la respuesta inicial global de los equipos paliativos ante la pandemia por la COVID-19 y propone una serie de recomendaciones sobre las que plantear intervenciones futuras que respondan a la futura realidad pos-COVID-19

INTRODUCTION: The sudden and intense COVID-19 outbreak has caused in our society a lot of suffering in patients and families alike, and has also put high pressure on professionals and services. Its peculiar characteristics have led to the emergence of palliative care as one of the main axes for its approach. This fact has led to a restructuring of palliative care and psychosocial care teams and services. AIMS: To describe the initial response of various palliative care and psychosocial care teams to the COVID-19 pandemic, as well as to draw up a series of recommendations regarding the possibility of a new reactivation of the pandemic. MATERIAL AND METHODS: After a narrative review of the literature, a questionnaire was prepared with the most outstanding organizational elements. This questionnaire was sent to various experts and opinion leaders in palliative care in Spain. In a second phase, and after analyzing the results of the questionnaire, a series of recommendations were issued. RESULTS: The highlighted elements of the literature review were: 1) equipment preparation and protection; 2) the presence of palliative care in the health system; 3) intervention in acute patients; 4) development of care plans; 5) provision of essential medication; 6) volunteering; 7) teaching; and 8) civil society participation. A total of 26 out of 31 experts responded. The results show a variable organizational response, from involvement and leadership to reduction of structures, according to the the position previously held in the system. Among the proposals to face a new wave of the pandemic are: 1) evaluating the state of equipments; 2) assessing the degree of adaptation and response to the crisis; 3) satisfying new needs; 4) promoting proactive intervention; and 5) reprograming current palliative care plans. CONCLUSIONS: This work shows the initial global response of palliative teams to the COVID-19 pandemic, and issues a series of recommendations on which future interventions to respond to post-COVID-19 reality should be based

Programa E-Health ICOnnecta't: un ecosistema para fomentar el bienestar en cáncer a través de la propuesta europea ONCOMMUNP / E-Health ICOnnecta't program: An ecosystem to promote wellbing in cancer towards ONCOMMUN European proposal

INTRODUCCIÓN: A pesar de que los tratamientos psico-oncológicos han demostrado su efectividad en disminuir el malestar emocional y mejorar la calidad de vida de las personas con cáncer, aún existen numerosas barreras que limitan su acceso. La transformación a online de esta atención se plantea como una solución para aumentar la cobertura del servicio y mejorar su coste-utilidad. OBJETIVO: Crear un ecosistema digital de salud para reducir el impacto del cáncer, aumentando el bienestar y la calidad de vida del ciudadano con cáncer. MÉTODO: Programa dirigido a pacientes diagnosticadas de cáncer de mama en fase de supervivencia aguda. Es un programa de atención escalonada dividido en 4 niveles de intervención jerarquizados por complejidad: Nivel 1, cribado y monitorización psicosocial; Nivel 2, Campus: psicoeducación y educación sanitaria; Nivel 3, soporte psicosocial comunitario; y Nivel 4, tratamiento psicoterapéutico grupal. RESULTADOS: En 2019, 259 mujeres fueron incluidas en el programa (39,91% de los nuevos casos de cáncer de mama en los centros participantes). Solo el 3,47% (n = 9) requirió atención clínica especializada (Nivel 4). CONCLUSIÓN: El programa Iconnecta't adopta un modelo integrado de atención psicosocial en cáncer que se adecúa a las necesidades específicas de los supervivientes. Da solución a algunas de las barreras de la atención sanitaria tradicional, democratizando el acceso a los servicios mediante el uso de tecnologías de uso común en la mayoría de ciudadanos. En un futuro próximo se prevé la implementación progresiva a otras neoplasias, junto con un ensayo clínico controlado y aleatorizado que evaluará su eficacia

INTRODUCTION: Although psycho-oncological treatments have already demonstrated their effectiveness in reducing emotional distress and improving quality of life in people with cancer, there are still numerous barriers limiting their access. The digital transformation of care is proposed as a solution to increase service coverage and improve its cost-utility. AIM: Create a digital health ecosystem to reduce the impact of cancer, increasing users' well-being and quality of life. METHOD: The program is addressed to patients diagnosed with breast cancer in the acute survival phase. It is a stepped-care intervention divided into 4 levels ordered by complexity: Level 1, psychosocial screening and monitoring; Level 2, Campus: psychoeducation and health education; Level 3, psychosocial community support; and Level 4, psychotherapeutic group treatment. RESULTS: In 2019, 259 women were included in the program (39.91% of new breast cancer cases in participating centers), and only 3.47% (n = 9) required specialized clinical care (Level 4). CONCLUSIONS: The Iconnecta't program adopts an integrated model of psychosocial care in cancer that adapts to survivors' specific needs. It overcomes some of the barriers of traditional healthcare, democratizing service access through the use of common technologies among the vast majority of citizens. In the near future, progressive implementation to other cancer diagnoses is planned, together with a randomized controlled trial to evaluate its effectiveness

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.].

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.

How to design and implement palliative care public health programmes: foundation measures. An operational paper by the WHO Collaborating Centre for Public Health Palliative Care Programmes at the Catalan Institute of Oncology.

This paper summarises the recommendations of the WHO Collaborating Centre for Palliative Care Public Health Programmes with respect to design and implementation of palliative care national or regional public health palliative care programmes in their initial phases. We describe the elements of a programme (leadership and aims; needs and context assessment; definition of the target patients; general measures in conventional services; specialist services in different settings; sectorised networks; education and training; availability and accessibility of opioids and essential drugs; legislation; standards; budget; valuation and improvement of quality; and evaluation of results and indicators) and the specific recommendations to implement the first steps of each component. Palliative care planning needs to be systematic, inserted in all levels of the healthcare system and adapted to the cultural and organisational status of the system. Coverage for all types of patients in need, together with equity and quality, are the main aims of programmes.

1ª Reunión Nacional de Trabajo Multidisciplinar en Oncogeriatría: documento de consenso / 1st National Meeting of Multidisciplinary Work in Oncogeriatrics: Expert Consensus Document

El pasado día 2 de junio de 2011 el Institut Català d’Oncologia l’Hospitalet-Hospital Duran i Reynals acogió la primera Reunión de Trabajo Multidisciplinar en Oncogeriatría. La idea de la reunión, iniciativa de las Sociedades Médicas de Oncología Radioterápica, Geriatría y Gerontología, Cuidados Paliativos y Oncología Médica, fue la de iniciar una línea de trabajo conjunta entre las diferentes especialidades que intervienen habitualmente en el manejo del paciente de edad avanzada con patología oncológica. En este documento se recoge un resumen de los temas tratados(AU)

On 2nd of June 2011 the Institut Català d’ Oncologia l’Hospitalet--Hospital Duran i Reynals hosted the first Meeting of Multidisciplinary Work in Oncogeriatrics. The reason for the meeting, which follows on from an initiative of the Medical Societies of Radiotherapy, Oncology, Geriatrics and Gerontology and Palliative Care and Medical Oncology, was to initiate a joint line of work among the different specialties that generally take part in the handling of the elderly patient suffering from oncologic pathologies. This document summarises the different subjects covered during the Meeting(AU)

[1st National Meeting of Multidisciplinary Work in Oncogeriatrics: expert consensus document]. / 1.(a) Reunión Nacional de Trabajo Multidisciplinar en Oncogeriatría: documento de consenso.

On 2nd of June 2011 the Institut Català d' Oncologia l'Hospitalet--Hospital Duran i Reynals hosted the first Meeting of Multidisciplinary Work in Oncogeriatrics. The reason for the meeting, which follows on from an initiative of the Medical Societies of Radiotherapy, Oncology, Geriatrics and Gerontology and Palliative Care and Medical Oncology, was to initiate a joint line of work among the different specialties that generally take part in the handling of the elderly patient suffering from oncologic pathologies. This document summarises the different subjects covered during the Meeting.

The Catalonia World Health Organization demonstration project for palliative care implementation: quantitative and qualitative results at 20 years.

Catalonia (Spain) has a total population of 7.3 million citizens for whom the National Health Service (NHS) provides health care that is free at the point of access. The prevalence of terminally ill patients is between 30,100 and 39,600. Twenty years ago, the World Health Organization (WHO), in collaboration with the Catalan Department of Health and the Catalan Institute of Oncology, began a demonstration project (WHO Demonstration Project) in palliative care (PC) with the aim of implementing specialist PC services, generating experience in this field, identifying areas for improvement, and introducing educative procedures (clinical and nonclinical). Over the past 20 years, 237 PC clinical services (72 home care support teams, 49 hospital support teams, 60 units with 742 dedicated beds, 50 outpatient clinics, and six psychosocial support teams) have been implemented. In the five years since the previous evaluation, 57 new clinical services (15 new hospital support teams, 36 outpatient clinics, and six psychosocial support teams among others) and four nonclinical services (education, research, WHO Collaborating Center, and planning) have been implemented. During the year 2010, a total of 46,200 processes were undertaken for the care of 23,100 patients, of whom 12,100 (52%) had cancer and 11,000 (48%) had other chronic advanced diseases. The overall yearly costs are around €52,568,000, with an overall savings of €69,300,000 (€2275 per patient, net savings to the NHS of €16,732,000). In the last five years, three qualitative evaluations and a benchmarking process have been performed to identify weak points and inequities in care provision among districts. Systematic assessments indicate high cost-effectiveness of care as well as high levels of satisfaction by patients and their relatives, thus reinforcing the principle that access to PC under the auspices of the NHS at the end of life is a basic human right.

Código de buena práctica para el control del dolor oncológico / Good clinical practice guide for control of oncological pain

En muchas ocasiones, los pacientes con cáncer no expresan su dolor por miedo a que el médico desvíe su atención hacia este síntoma, en lugar de centrarse en el tratamiento de su enfermedad principal. No obstante, el paciente debe saber que el tratamiento de su dolor no sólo no interfiere con la terapia curativa, sino que colabora con ella. Entre los pacientes, es habitual el temor a que el avance de la enfermedad les lleve a situaciones de sufrimiento insostenible que supere todas las posibilidades médicas, pero es nuestro deber ayudarles a ser conscientes de que la medicina ofrece un abanico de tratamientos capaces de aliviar su dolor y evitar su sufrimiento. Este conocimiento es esencial para aumentar su confianza en el tratamiento y mejorar la relación médico-paciente. Frente a este desafío, la Sociedad Española de Cuidados Paliativos, la Sociedad Española del Dolor, la Sociedad Española de Oncología Médica y la Sociedad Española de Oncología (..) (AU)

Patients with cancer often do not mention their pain as they are afraid that the doctor will be distracted towards this symptom instead of focusing on the treatment of their primary disease. However, should know that the treatment of their pain not only does it not interfere with their remedial therapy, but also contributes to it. It is usual, among patients, to be afraid that the advance of the disease may lead to situations of unsustainable suffering which may exceed all the medical possibilities, but it is our duty to help them to be aware that medicine offers a wide range of treatments to relieve their pain and prevent them suffering. This knowledge is essential to increase their (..)(AU)

Quality improvement in palliative care services and networks: preliminary results of a benchmarking process in Catalonia, Spain.

BACKGROUND: A wide range of palliative care services has been implemented in Catalonia over the past 20 years. Quantitative and qualitative differences in the organization of palliative care services between districts and settings can result in wide variability in the quality of these services, and their accessibility. METHODS: We implemented a benchmark methodology to compare dimensions of care and organization, to identify aspects requiring improvement, and to establish indicators to measure progress. The overall aim was to generate a consensus document for submission to the Department of Health (DoH) of the Government of Catalonia. RESULTS: A Steering Committee convoked a meeting in Barcelona (Catalonia, Spain) and representatives (n = 114) of all the 37 districts within our health care remit (rural, urban, intermediate, and metropolitan) and settings of the health care system (hospitals, social health centers, community, and nursing homes) attended and took part in plenary sessions and workshops to define areas that, in their experience, were considered weak. Twenty-one consensus recommendations achieving high levels of consensus were generated for submission to the DoH. These included the formal definition of the model of care and organization of palliative care services at all levels in the region, the implementation of measures for improvement in different settings and scenarios, systems for continuous care, and facilities for the continuing training of health care personnel. These proposals have since been implemented in a trial region and, depending on the outcomes, will be applied throughout our health service. CONCLUSION: We conclude that benchmark methodology is valuable in acquiring data for use in improving palliative care organization for patients' benefit.

[Validation of the Spanish version of the Palliative Care Outcome Scale]. / Traducción, adaptación y validación de la Palliative Care Outcome Scale al español.

BACKGROUND AND OBJECTIVE: The objective of this study was to translate the Palliative Care Outcome Scale (POS) into Spanish and to validate it. MATERIAL AND METHOD: The translation and adaptation was based on the conceptual equivalence of the terms used. In order to study the psychometric properties, 200 patients receiving palliative care were asked to fill out the POS questionnaire, the European Organization for Research on Cancer Treatment Quality of Life Questionnaire (EORCT QLQ C-30), the Barthel Index and the Karnofsky Index on their first visit. The Spanish version of the POS questionnaire was given to the patients again, a week later, to measure the intra-observer reliability. RESULTS: There were no major problems with the translation and adaptation process. The Spanish POS adapted very well for both the staff and the patients versions. Inter- and intra-observer reliability was good, with intraclass correlation coefficients of between 0.61 and 0.93 according to the item. Internal consistency analysis showed a Cronbach's alpha of 0.62 for the staff version and 0.64 for the patients version. Most of the Spanish POS correlated with the EORTC QLQ C-30 emotional function scale and quality of life scale. CONCLUSIONS: The Spanish POS is a valid and reliable instrument for measuring the quality of life of patients receiving palliative care. It is useful in research as well as in everyday clinical practice.

Traducción, adaptación y validación de la Palliative Care Outcome Scale al español / Validation of the Spanish version of the Palliative Care Outcome Scale

FUNDAMENTO Y OBJETIVO: El objetivo de este estudio es traducir y validar al español la Palliative Care Outcome Scale (POS).MATERIAL Y MÉTODO: La traducción y adaptación se realizó por el método de traducción y retraducción centrada en garantizar la equivalencia conceptual de los términos utilizados. Para el estudio de las propiedades psicométricas se seleccionó una muestra de 200 enfermos en cuidados paliativos a los que, en una primera visita, se les aplicó, además del cuestionario a evaluar, el EORTC QLQ C-30, el índice de Barthel y el de Karnofsky. Para la evaluación de la fiabilidad intraobservador, a la semana de la primera visita se volvió a aplicar la versión española de la POS.RESULTADOS: El proceso de traducción y adaptación no planteó mayores problemas. La Escala de Cuidados Paliativos (ECP) mostró una excelente aceptación tanto por parte de los enfermos como de los profesionales sanitarios, así como una fiabilidad inter e intraobservador con unos coeficientes de correlación intraclase entre 0,61 y 0,93 según el ítem. El análisis de la consistencia interna mostró un de Cronbach de 0,62 en el formato para el personal sanitario y de 0,64 en el formato para el enfermo. La mayoría de los ítems de la ECP se correlacionaron con la escala de función emocional y la escala de calidad de vida global del EORTC QLQ C-30.CONCLUSIONES: La ECP es un instrumento de medida de la calidad de vida de los pacientes en cuidados paliativos válido y fiable que puede ser útil tanto en trabajos de investigación como en la práctica clínica diaria (AU)

Breakthrough cancer pain: prevalence and characteristics in patients in Catalonia, Spain.

Breakthrough pain (BTP), a transitory exacerbation of pain superimposed on a background of persistent, usually adequately controlled pain, has been reported to occur in 50% to 75% of cancer patients. However, a 23% prevalence of BTP was recently reported in a study of Spanish patients with advanced cancers, showing probably a low detection rate of this clinical problem. The purpose of the present study was to determine the prevalence of BTP among oncology patients managed by palliative care teams in Catalonia, Spain, and to characterize the frequency, intensity, and treatment of BTP episodes. Sixty-two teams studied 397 patients on a predetermined index day. BTP was reported by 163 (41%) patients, with a total of 244 episodes (mean 1.5 episodes/patient/day). Mean (SD) intensity of BTP episodes was 7.3 (2.0), compared with 2.9 (2.7) for persistent pain (both 0-10 scales). Morphine was used to treat 52% of BTP episodes, while 25% were untreated. These findings indicate that BTP remains underrecognized and undertreated in Spain.