Cross-cultural adaptation and semantic validation of an instrument to identify palliative requirements in Portuguese / Adaptação transcultural e validação semântica de instrumento para identificação de necessidades paliativas em língua portuguesa

ABSTRACT Objective To translate and make cross-cultural adaptation of NECPAL CCOMS-ICO© tool to Portuguese, and to analyze its semantic validity. Methods A methodological research about NECPAL CCOMS-ICO© tool cross-cultural adaptation, translated from Spanish into Portuguese and measurement of semantic validity. The cross-cultural adaptation process was conducted according to Beaton recommendations, including translation, translation synthesis, back-translation, and analysis of semantic, idiomatic, conceptual, and cultural equivalence of translated and back-translated tool versions, resulting in a pre-final version, which was submitted to a pre-test (n=35). Contend Validity Index was calculated to analyze semantic validity. Results Cross-cultural adaptation process allowed us to prepare the final version of this tool, which was named NECPAL-BR. Collected data from pre-testing step enabled the analysis of semantic validity. The Content Validity Index observed at this step was 0.94. Conclusion The semantic validity of the tool in its Portuguese version was confirmed; therefore, it may assist in screening chronic progressive disease patients, aiming to provide early palliative care. It may also be used to develop clinical and team performance indicators, and be employed as a care management tool designed to optimize resources.

RESUMO Objetivo Realizar a tradução e a adaptação transcultural, e analisar a validade semântica do instrumento NECPAL CCOMS-ICO© para a língua portuguesa. Métodos Pesquisa metodológica, de adaptação transcultural da versão espanhola do instrumento para a língua portuguesa e mensuração da validade semântica. Conduziu-se a adaptação transcultural com base nas recomendações de Beaton, que inclui tradução, síntese da tradução, retrotradução, e análise da equivalência semântica, idiomática, conceitual e cultural das versões, resultando na versão pré-final, a qual foi submetida ao pré-teste (n=35). Para analisar a validade semântica, foi calculado o Índice de Validade de Conteúdo. Resultados O processo de adaptação transcultural possibilitou a elaboração da versão final, denominada NECPAL-BR. Os dados do pré-teste possibilitaram a análise da validade semântica. O Índice de Validade de Conteúdo obtido nessa etapa foi de 0,94. Conclusão O instrumento possui validade semântica em sua versão em língua portuguesa e, portanto, pode auxiliar na triagem de pacientes com doença crônica progressiva, com vistas a oferecer, de forma precoce, atenção paliativa. Pode, ainda, propiciar o desenvolvimento de indicadores clínicos, de desempenho de equipe e servir como ferramenta de gestão do cuidado, visando à otimização de recursos.

Análisis de los resultados de un programa de calidad en cuidados paliativos para los óltimos días de vida: Diez aóos de experiencia / Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience

Las secuencias integradas de cuidado para ó;ºltimos días de vida proponen estándares de calidad para optimizar la atenció;n de pacientes y familias. Se implementó; el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducció;n, implementació;n, diseminació;n y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situació;n de ó;ºltimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó; una auditoría antes y despuó;©s de la ejecució;n del programa, aó;ºn en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicació;n, necesidades multidimensionales, hidratació;n y nutrició;n, documentació;n de intervenciones y cuidados post mortem. El análisis conjunto mostró; una mejoría del nó;ºmero de registros (p = 0.001). La comunicació;n del plan de cuidados con el paciente no mostró; diferencias (p = 0.173). Se realizó; capacitació;n y supervisió;n permanente a los equipos profesionales de quienes se registraron percepciones de la implementació;n. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definició;n subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró; la factibilidad de un modelo de atenció;n para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

Spanish adaptation and validation of the supportive & palliative care indicators tool - SPICT-ESTM / Adaptación y validación al español del cuestionario de identificación paliativa SPICT-ESTM

ABSTRACT OBJECTIVE To culturally adapt and validate the SPICTTM to Spanish, which is a brief and simple tool to support a better identification of chronic patients who have palliative care needs. METHODS For this study, we designed a multicenter and national project between the centers of Galicia, Balearic Islands, and Andalusia. For the process of translation and cross-cultural adaptation of the SPICTTM to Spanish, we followed the steps proposed by Beaton et al. with successive translations and subsequent consensus of experts using the debriefing methodology. After the content validation was completed, the psychometric properties were validated. A prospective longitudinal study was designed with 188 patients from Galicia, the Balearic Islands, and Andalusia. The internal consistency and reliability of the test and retest was analyzed for 10 days by the same researcher. RESULTS For more than 90% of the participants of the SPICT-ESTM, it seems simple to be filled out, and they consider it written in an understandable language. The average time to apply the questionnaire without prior knowledge was 4 minutes and 45 seconds. To evaluate the internal consistency of the instrument, we used the Kuder-Richardson formula 20. Internal consistency is 0.71. The agreement index of the Kappa test is between 0.983 and 0.797 for the different items. CONCLUSIONS In this study, we demonstrate the equivalence of content with the original. In addition, the validation of the psychometric properties establishes that the SPICT-ESTM maintains adequate reliability and stability. If we add the satisfaction shown by the professionals and the ease of use, the SPICT-ESTM is an adequate tool for the identification of palliative patients with chronic diseases and palliative care needs.

RESUMEN OBJETIVO Adaptar culturalmente al español y validar el SPICTTM, una herramienta breve y sencilla para apoyar una mejor identificación de pacientes crónicos que presentan necesidades de atención paliativa. MÉTODOS Para este estudio se diseñó un proyecto multicéntrico y nacional entre centros de Galicia, Islas Baleares y Andalucía. Para el proceso de traducción y adaptación transcultural del SPICTTM al castellano, se siguieron los pasos propuestos por Beaton et al. con sucesivas traducciones y posterior consenso de expertos mediante la metodología debriefing. Tras finalizar la validación de contenido se procedió a la validación de las propiedades psicométricas. Se diseñó un estudio longitudinal prospectivo en 188 pacientes de Galicia, Baleares y Andalucía. Fue analizada la consistencia interna y la fiabilidad test-retest a los 10 días por el mismo investigador. RESULTADOS A más del 90% de los participantes SPICT-ESTM les parece sencillo cumplimentarlo, y consideran que está escrito en un lenguaje comprensible. El tiempo medio para aplicar el cuestionario sin conocimiento previo fue de 4 minutos y 45 segundos. Para la evaluación de la consistencia interna del instrumento, se ha utilizado la fórmula Kuder Richardson 20. La consistencia interna es de 0,71. El índice de concordancia del test Kappa se encuentra entre 0,983 y 0,797 para los distintos ítems. CONCLUSIONES En este estudio se ha demostrado la equivalencia de contenido con el original. Además, la validación de las propiedades psicométricas establece que SPICT-ESTM mantiene una adecuada fiabilidad y estabilidad. Si añadimos la satisfacción mostrada por los profesionales y la facilidad de uso, SPICT-ESTM es una herramienta adecuada para la identificación de pacientes paliativos con enfermedades crónicas y necesidad de cuidados paliativos.