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.

Desarrollo de la escala DME-C: una escala para la detección del malestar emocional de los cuidadores principales de personas con enfermedad avanzada o al final de la vida / Development of the DME-C: A scale for detecting emotional distress in primary caregivers of patients living with advanced illness or approaching end of their lives

Se presenta el desarrollo de la Escala de Detección de Malestar Emocional de los Cuidadores principales de pacientes con enfermedad avanzada o terminal que reciben cuidados paliativos (DME-C). Se describe el proceso de elaboración de la escala. Para ello, se ha revisado la bibliografía existente sobre el tema, se ha establecido un marco teórico de referencia y los criterios que debía cumplir el instrumento de cribado que se iba a elaborar. La escala DME-C consta de 2 partes: 1) 3 preguntas dirigidas a los cuidadores, y 2) la observación realizada por el personal sanitario de la presencia de signos externos de malestar emocional del cuidador. La escala final fue revisada tanto por expertos como por cuidadores. La escala DME-C es una herramienta apropiada para la identificación del malestar emocional de los cuidadores. Proponemos el uso sistemático de la DME-C para una detección precoz e intervención específica del sufrimiento emocional

This paper presents the development of the Detection of Emotional Distress Scale in primary Caregivers (DED-C) of patients living with advanced disease or terminal illness who are receiving palliative care. The scale development process is described. For this purpose, literature has been reviewed and a theoretica framework of study as well as the characteristics of the screening tool have been established. The DED-C scale consists of 2 parts: 1) 3 questions addressed to primary caregivers, and 2) the health care professional’s appreciation or observation of any external signs of emotional distress on behalf of the caregivers. The final scale was reviewed by experts and caregivers. The DED-C scale will be an appropriate tool for identifying caregivers’ emotional distress. We propose the systematic use of DED-C for early detection of and specific intervention on emotional distress

Evaluación de las propiedades psicométricas del cuestionario de Detección de Malestar Emocional (DME) en pacientes oncológicos / Assessment of the psychometric properties of the Detection of Emotional Distress Scale in cancer patients

Objetivo Con el fin de valorar y aliviar el malestar emocional al final de la vida, se necesitan instrumentos de cribado sencillos, de fácil uso por los sanitarios y comprensibles por los enfermos. En el presente estudio multicéntrico se analiza la utilidad clínica del cuestionario de Detección del Malestar Emocional (DME) en enfermos hospitalizados con cáncer avanzado. Métodos Para determinar las propiedades psicométricas de la escala se administró, a la vez que otros instrumentos y procedimientos, a 105 pacientes con enfermedad oncológica avanzada ingresados en unidades de cuidados paliativos de cinco hospitales de Cataluña. Resultados Se observó que el 58,3% presentaba malestar emocional moderado o muy intenso, similar al objetivado con otras escalas, como el termómetro emocional. El análisis estadístico de las curvas ROC sugiere que el punto de corte para la detección de malestar emocional que muestra el DME equivale a una puntuación ≥ 9 puntos, con una sensibilidad y una especificidad superiores al 75%.ConclusionesEl DME es útil y de fácil manejo para la identificación del malestar emocional en los enfermos oncológicos avanzados ingresados en unidades de cuidados paliativos. Se sugiere que esta escala también se podría aplicar a otros enfermos y ámbitos de la atención sanitaria, por ejemplo la atención domiciliaria o la atención primaria en enfermos crónicos (AU)

Objective To evaluate and alleviate the emotional distress suffered by advanced cancer patients, simple screening methods that can be easily used by health staff and easily understood by patients are required. The objective of this multicenter study was to analyze the psychometric properties and clinical utility of the Detection of Emotional Distress (DED) scale in advanced cancer patients attending a palliative care unit. Methods The DED scale was administered to 105 advanced cancer patients attended in five palliative care units in Catalonia (Spain).Results A total of 58.3% of the patients had moderate to severe emotional distress, a result similar to those of other scales such as the emotional thermometer. Statistical analysis of ROC curves suggested that the cutoff for the detection of emotional distress by the DED scale was equivalent to a score of ≥ 9 points, with a sensitivity and specificity above 75%.ConclusionsThe DED scale is useful and easy to use in the identification of emotional distress in advanced cancer patients attended in palliative care units. This scale could also be applied in other patients and health care fields, such as patients with chronic diseases, home care, and primary care (AU)

[Assessment of the psychometric properties of the Detection of Emotional Distress Scale in cancer patients]. / Evaluación de las propiedades psicométricas del cuestionario de Detección de Malestar Emocional (DME) en pacientes oncológicos.

OBJECTIVE: To evaluate and alleviate the emotional distress suffered by advanced cancer patients, simple screening methods that can be easily used by health staff and easily understood by patients are required. The objective of this multicenter study was to analyze the psychometric properties and clinical utility of the Detection of Emotional Distress (DED) scale in advanced cancer patients attending a palliative care unit. METHODS: The DED scale was administered to 105 advanced cancer patients attended in five palliative care units in Catalonia (Spain). RESULTS: A total of 58.3% of the patients had moderate to severe emotional distress, a result similar to those of other scales such as the emotional thermometer. Statistical analysis of ROC curves suggested that the cutoff for the detection of emotional distress by the DED scale was equivalent to a score of ≥ 9 points, with a sensitivity and specificity above 75%. CONCLUSIONS: The DED scale is useful and easy to use in the identification of emotional distress in advanced cancer patients attended in palliative care units. This scale could also be applied in other patients and health care fields, such as patients with chronic diseases, home care, and primary care.

Elaboración y propuesta de un instrumento para la detección de malestar emocional en enfermos al final de la vida / Purpouse of an instrument for the detection of emotional distress in patients at the end of life

Objetivo: Establecer la sistemática de trabajo de un grupo multidisciplinar cuyo objetivo es elaborar un instrumento para detectar el malestar emocional en enfermos al final de la vida. Material y métodos: Se describe la formación y composición del equipo investigador así como su dinámica de trabajo a lo largo de 2007 y 2008 en múltiples reuniones presenciales y on-line así como la bibliografía, el modelo y criterios que sirvieron de base para el debate que condujo a la elaboración del instrumento. Resultados: Se presenta el cuestionario DME, que consta de dos partes: 1) cuatro preguntas dirigidas al enfermo, y 2) observación, por parte del sanitario, de signos que muestren la presencia de malestar emocional. Actualmente se encuentra en proceso de validación (AU)

Objective: To establish the methodology of work for a multidisciplinary group whose objective is to generate a tool to detect the emotional distress in patients at the end of their lives. Material and method: It describes the configuration and composition of the researching team as well as its method of work throughout 2007 and 2008. The combination of multiple face to face meetings, online conferences and the review of related bibliography formed the model and the criteria used as the basis for the debate that lead to the elaboration of the instrument. Results: The questionnaire DME is presented, and consists of two parts: 1) four questions addressed to the patient, and 2) observation by the health staff of signs that show the presence of emotional distress. At the moment, the instrument is under validation (AU)