Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties.

BACKGROUND: Family caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools. AIM: This study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC). DESIGN: Multicentre, cross-sectional study. SETTINGS/PARTICIPANTS: Family caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA). RESULTS: 138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach's alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale. CONCLUSIONS: The DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

La experiencia psicológica de un paciente pediátrico con cáncer en momentos de amenaza vital: estudio de caso / The psychological experience of a pediatric patient with cancer facing life-threatening situations: a case study

Introducción: El cáncer se considera una enfermedad amenazante para la vida que implica la posibilidad de que el niño fallezca prematuramente. Existe poca información desde la visión del paciente pediátrico sobre su experiencia psicológica en momentos de amenaza vital. El presente trabajo pretende ampliar este conocimiento a través de la experiencia vivida en momentos de amenaza vital de un niño superviviente de cáncer. Paciente y métodos: Paciente de 9 años al que le diagnosticaron un osteosarcoma en el fémur. Se trata de un estudio de caso en el que se realizó un análisis fenomenológico interpretativo con los datos obtenidos a través de una entrevista semiestructurada. Resultados: Se evidencia que los principales sentimientos en el momento de amenaza vital fueron miedo, tristeza e impotencia. Uno de los factores desencadenantes fue pensar en la posibilidad de tener que separarse de sus padres. Esta experiencia tuvo impacto en su vida e influyó en su identidad. Para hacer frente a esta situación difícil utilizó estrategias de afrontamiento de aproximación, como la conexión emocional, y de evasión como la distracción, el humor y el olvido. Discusión: Las reacciones emocionales frente a la posibilidad de amenaza vital y el impacto que esta tuvo en la vida del menor se pueden interpretar dentro del modelo del Estrés Traumático Médico Pediátrico. Conocer la experiencia desde el punto de vista del paciente pediátrico y la forma de afrontarla puede ayudar a reforzar o adaptar las intervenciones de la práctica clínica. (AU)

Introduction: Cancer is considered a life-threatening disease as it implies the probability that the child will die prematurely. There is little information from the pediatric patient's perspective about their psychological experience in life-threatening situations. This study aims to expand knowledge in this area by presenting the experience of a child cancer survivor in lifethreatening situations. Patient and methods: a 9-year-old patient who was diagnosed with osteosarcoma in the femur. A case study design followed, in which the information was collected through a semi-structured interview, and an interpretative phenomenological analysis was carried out with the resulting data. Results: The main feelings experienced in life-threatening situations were fear, sadness and impotence. One of the trigger factors was to think about the possibility of being separated from his parents. This experience had an impact on his life and shaped his identity. To deal with this difficult situation, he used approach coping strategies, such as emotional connection, and avoidance strategies such as distraction, humor, and forgetting. Discussion: The emotional reactions to the experience and the impact that this had on the child's life can be interpreted within the Pediatric Medical Traumatic Stress model. Knowing the experience from the point of view of the pediatric patient, together with his or her way of coping with it, can help to reinforce or adapt the interventions in clinical practice. (AU)

The psychological experience of pediatric oncology patients facing life-threatening situations: A systematic review with narrative synthesis.

OBJECTIVE: The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs. METHODS: The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the "Critical Appraisal Skills Programme." RESULTS: A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty. SIGNIFICANCE OF RESULTS: The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients' subjectivity.

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.

Evaluación de las propiedades psicométricas de la Escala de Detección de la Soledad Existencial en pacientes con enfermedades avanzadas / Assessment of the psychometric properties of the Scale of Detection of Existential Loneliness in patients with advanced diseases

Objetivo: Analizar las propiedades psicométricas y la utilidad clínica de la Escala de Soledad Existencial (EDSOL) en enfermos hospitalizados con enfermedad avanzada. Método: Para determinar las propiedades psicométricas de la escala, se administró la escala EDSOL junto con otros instrumentos a 103 pacientes adultos con enfermedades avanzadas ingresados en 5 unidades de cuidados paliativos de hospitales catalanes. Resultados: La escala presenta una excelente fiabilidad medida a través del alfa de Cronbach (0,902) y una adecuada estabilidad temporal (r=0,71). La escala mostró correlaciones positivas y significativas con ansiedad y depresión de la escala HADS y con la suma total de la misma, así como con la valoración clínica psicológica (p<0,01). A través del análisis estadístico de las curvas ROC se determinó que la escala presentaba una sensibilidad del 79,8% y una especificidad del 74,6% y se sugiere que el punto de corte para la detección de la EDSOL sea una puntuación de 5. Conclusiones: La EDSOL presenta unas buenas propiedades psicométricas, es sencilla, breve, fiable y fácil de administrar. Consideramos que es una escala útil para detectar la presencia de soledad existencial en enfermos hospitalizados que padecen enfermedades avanzadas

Aim: To analyze the psychometric properties and the clinical utility of the Scale of Existential Loneliness (EDSOL) in hospitalized patients with advanced disease. Method: To determine the psychometric properties of the scale, the EDSOL scale was administered along with other instruments to 103 adult patients with advanced diseases admitted to 5 palliative care units of Catalan hospitals. Results: The scale presents an excellent reliability measured through Cronbach’s alpha (0.902) and adequate temporal stability (r = 0.71). The scale showed positive and significant correlations with anxiety and depression of the HADS scale and with the overall score of HADS, as well as with the clinical psychological assessment (p <0.01). Through the statistical analysis of the ROC curves, it was determined that the scale had a sensitivity of 79.8% and a specificity of 74.6% and it is suggested that the cut-off point for the detection of EDSOL be a score of 5. Conclusions: The EDSOL scale has good psychometric properties, is simple, brief, reliable and easy to administer. We consider that is an useful scale to detect the presence of existential loneliness in hospitalized patients suffering from advanced diseases

Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale.

OBJECTIVE: The goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context. METHOD: The scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer. RESULT: All respondents evaluated the tool as "excellent." In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28. SIGNIFICANCE OF RESULTS: To provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.

Desarrollo de la escala "EDSOL" para la detección de la soledad existencial en enfermos al final de la vida / Development of the EDSOL scale for the detection of existential loneliness in patients at end of life

Objetivo: Presentar el desarrollo de la escala de detección de la soledad existencial (EDSOL) en personas con enfermedades avanzadas en tratamiento paliativo. Método: Se describe el proceso de elaboración de la escala Detección de la Soledad Existencial EDSOL. Para ello, 1) se ha revisado la bibliografía existente sobre el tema; 2) se ha establecido un marco teórico de referencia; 3) se han definido los criterios que debía cumplir el instrumento de cribado; y 4) se ha consultado con expertos y enfermos la adecuación de los ítems de la escala. Resultados: Se presenta a la escala EDSOL, que consta de dos partes: 1) tres preguntas dirigidas a los enfermos; y 2) diferentes observaciones realizadas por el personal sanitario acerca de la presencia de signos externos de soledad existencial. La escala final fue revisada por enfermos y profesionales. Conclusión: La escala EDSOL es una herramienta apropiada para identificar la presencia de Soledad Existencial en pacientes al final de la vida. En este caso, se propondrá su uso sistemático en la detección temprana de la Soledad Existencial y la implementación de intervenciones asistenciales específicas (AU)

Aim: This paper presents the development of Detection of Existential Loneliness Scale (EDSOL) of patients with advanced disease/terminal illness that receiving palliative care. Method: The process of preparing the scale is described. For this: 1) the literature on the subject has been revised, 2) theoretical framework has been established, 3) it has been defined the criteria to be met by the screening tool, and 4) the final scale was reviewed by patients and experts. Results: The EDSOL scale consists of two parts: 1) three questions addressed to patients and; 2) several questions addressed to health staff about the observation of external signs of Existential Loneliness. The final scale was reviewed by patients and experts (facie validity) showing good validity. Conclussion: The EDSOL scale will be an appropriate tool for identifying the Existential Loneliness of patients at the end of life or advanced illness. In this case, we will propose the systematic use of EDSOL for early detection and specific interventions on existential loneliness experiences (AU)

Effectiveness of Psychosocial Interventions in Complex Palliative Care Patients: A Quasi-Experimental, Prospective, Multicenter Study.

OBJECTIVE: To determine whether specific psychosocial interventions can ease discomfort in palliative care (PC) patients, particularly in those with high levels of pain or emotional distress. METHODS: Changes in the psychological parameters of 8333 patients were assessed in a quasi-experimental, prospective, multicenter, single group pretest/post-test study. Psychosocial care was delivered by 29 psychosocial care teams (PSTs; 137 professionals). Pre- and post-intervention changes in these variables were assessed: mood, anxiety, and emotional distress. Patients were classified as complex, when presented with high levels of anxiety, mood, suffering (or perception of time as slow), and distress (or unease, or discomfort), or noncomplex. These groups were compared to assess changes in suffering-related parameters from baseline. RESULTS: Psychosocial interventions reduced patients' suffering. These interventions were more effective in complex patients. CONCLUSIONS: After successive psychosocial interventions, the level of suffering in complex patients decreased until close to parity with noncomplex patients, suggesting that patients with major complexity could benefit most from specific psychosocial treatment. These findings support the importance of assessing and treating patients' psychosocial needs.

Manual para la atención psicosocial y espiritual a personas con enfermedades avanzadas: Intervención psicológica y espiritual

Manual que pretende servir de guía a los profesionales de la salud que se dedican a la atención paliativa y, en particular, a los que ejercen la psicología y que resulte una herramienta útil para todas aquellas personas que, desde la praxis profesional, intentan aliviar el sufrimiento y promover el bienestar de pacientes y familiares, previniendo a la par el desgaste emocional de los profesionales y optimizando su competencia. Contiene: Psicología de la salud y cuidados paliativos, muerte, cultura y cuidados paliativos, breve historia de la psicología paliativa en España, fundamentos antropológicos, éticos y relacionales de la intervención psicológica en cuidados paliativos, situación de enfermedad avanzada. Identificación de los pacientes oncológicos y no oncológicos y transiciones al final de la vida, modelos de encuadre en cuidados paliativos, evaluación psicológica en cuidados paliativos, modelos de intervención psicológica específicos al final de la vida, competencias del psicólogo, situaciones clínicas psicosociales prevalentes. Intervención psicológica, información y comunicación, familia y entorno afectivo, duelo, dimensión ética, espiritualidad, atención paliativa pediátrica. Consideraciones especiales, cuidados paliativos no oncológicos. Consideraciones especiales, equipo de cuidados paliativos y burnout.

Enhancing psychosocial and spiritual palliative care: Four-year results of the program of comprehensive care for people with advanced illnesses and their families in Spain.

OBJECTIVE: We aimed to describe the overall quantitative and qualitative results of a "La Caixa" Foundation and World Health Organization Collaborating Center Program entitled "Comprehensive Care for Patients with Advanced Illnesses and their Families" after four years of experience. METHOD: Qualitative and quantitative methods were employed to assess the program. Quasiexperimental, prospective, multicenter, single-group, and pretest/posttest methods were utilized to assess the quantitative data. The effectiveness of psychosocial interventions was assessed at baseline (visit 1) and after four follow-up visits. The following dimensions were assessed: mood state, discomfort, anxiety, degree of adjustment or adaptation to disease, and suffering. We also assessed the four dimensions of the spiritual pain scale: faith or spiritual beliefs, valuable faith or spiritual beliefs, meaning in life, and peace of mind/forgiveness. Qualitative analyses were performed via surveys to evaluate stakeholder satisfaction. RESULTS: We built 29 psychosocial support teams involving 133 professionals-mainly psychologists and social workers. During the study period, 8,964 patients and 11,810 family members attended. Significant improvements were observed in the psychosocial and spiritual dimensions assessed. Patients, family members, and stakeholders all showed high levels of satisfaction. SIGNIFICANCE OF RESULTS: This model of psychosocial care could serve as an example for other countries that wish to improve psychosocial and spiritual support. Our results confirm that specific psychosocial interventions delivered by well-trained experts can help to ease suffering and discomfort in end-of-life and palliative care patients, particularly those with high levels of pain or emotional distress.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

BACKGROUND: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. OBJECTIVE: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. RESULTS: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. CONCLUSIONS: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

Efectividad de la intervención psicosocial en pacientes con enfermedad avanzada y final de vida / No disponible

Objetivos: Demostrar la efectividad de la intervención psicosocial en la atención integral a personas con enfermedades avanzadas. Método: Se ha evaluado la presencia y evolución de parámetros psicológicos y espirituales de 8.964 pacientes, visitados por 117 profesionales de 29 equipos en un estudio de diseño cuasi-experimental, prospectivo, multcéntrico de un solo grupo pre-test post-test. Resultados: Los resultados muestran mejoras significativas en parámetros como ansiedad (RL 657,64; p<0,001), malestar emociona (RL 757,44; p<0,001), sentido de la vida (RL 248,30; p<0,001) y sentimientos de paz y perdón (RL 190,94; p<0,001). Conclusiones: El efecto positivo de la intervención psicosocial en la reducción de los parámetros psicológicos y espirituales evaluados sugiere que esta es eficaz en el contexto de la atención a personas con enfermedades avanzadas (AU)

Objective: To demonstrate the efficacy of psychosocial intervention in the comprehensive care of persons with advanced diseases. Methods: Presence and evolution of psychological and spiritual parameters have been evaluated in 8964 patients, attended by 117 professionals of 29 teams in a near experimental designed, prospective, and multi centric related to a single group pre and post test study. Results: Results show meaningful improvements in parameters such as: anxiety (RL 657.64 p<0.001), emotional distress (RL 757.44; p<0.001), meaning of life (RL 248.30; p<0.001) and peace and forgiveness feelings (RL 190.94; p<0.001). Conclusions: The positive effect of psychosocial intervention in reducing psychological and spiritual evaluated parameters suggests its effectiveness in the care given to people with advanced diseases (AU)