Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study.

OBJECTIVE: To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. METHODS: A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). RESULTS: A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. CONCLUSIONS: There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

Proposals for person-centred care in the COVID-19 era. Delphi study.

BACKGROUND: In this COVID-19 era, we need to rethink the criteria used to measure the results of person-centred care strategies. OBJECTIVE: To identify priorities, and criteria that health services can use to pursue actually the goal of achieving person-centred care. DESIGN: Three-phase online qualitative study performed during May-July of 2020 using the Delphi technique. SETTING AND PARTICIPANTS: An online platform was used for a consensus meeting of 114 participants, including health planning experts, health-care institution managers, clinicians and patients. MAIN OUTCOME MEASURES: Criteria and indicators for the achievement of person-centred care. MAIN RESULTS: The first round began with 125 proposals and 11 dimensions. After the second round, 28 ideas reached a high level of consensus among the participants. Ultimately, the workgroup agreed on 20 criteria for goals in the implementation of person-centred care during the COVID-19 era and 21 related indicators to measure goal achievement. DISCUSSION: Nine dimensions and 28 priorities were identified. These priorities are also in accordance with the quadruple aim approach, which emphasizes the need for care for health-care professionals, without whom it is impossible to achieve a better quality of care. CONCLUSIONS: Person-centred care continues to be a key objective. However, new metrics are needed to ensure its continued development during the restoration of public health services beyond the control of COVID-19. PATIENT OR PUBLIC CONTRIBUTION: Twelve professionals and patient representatives participated voluntarily in the construction of the baseline questionnaire and in the selection of the criteria and indicators using an online platform for consensus meetings.

The Measure of the Family Caregivers' Experience.

Objective: Design and validate a measure of the experience of family caregivers with the integrated care that receive the persons they care for. Methods: The new instrument for measuring the experience of caregivers is based on the Instrument to Evaluate the EXperience of PAtients with Chronic Diseases (acronym in Spanish: IEXPAC) scale instrument. With the qualitative technique of the discussion group, nine professionals and eight caregivers assessed the face validity of the instrument and they advised on issues to explore and the measuring scale to use. The instrument's items were analyzed individually, as well as its consistency, reliability, and construct and empirical validity. Results: 235 caregivers responded, of which 186 (79%) were women. The average age of the persons under their care was 83.9 years (SD 9.7). The scale's score when eliminating its items one by one ranged between 38.6 and 41.1. The factorial saturations of the items ranged between 0.53 and 0.82. Cronbach's alpha (12 elements) was 0.88 and the Kuder-Richardson coefficient was 0.91. The factorial solution explained 64.3% of the total variance and allowed isolating two factors (with 11 items with saturations greater than 0.65): care for the patient, and care for the caregiver. The internal consistency of both factors was greater than 0.80. The scale's score was 41.1 (SD 9.7). Conclusions: The Caregivers Experience Instrument combines acceptability, ease of comprehension, and perceived usefulness for the caregivers. It has adequate internal consistency, reliability, and construct and empirical validity.

Desarrollo de IEMAC, un Instrumento para la Evaluación de Modelos de Atención ante la Cronicidad / Development of an instrument for the assessment of chronic care models

Objetivos: Presentar el contexto, los objetivos y el proceso de elaboración de IEMAC, Instrumento de Evaluación de Modelos de Atención ante la Cronicidad, desarrollado para trasladar al terreno operativo los marcos conceptuales del Chronic Care Model (CCM), en el entorno del Sistema Nacional de Salud. Métodos: Mediante técnicas de investigación cualitativa y contando sucesivamente con expertos nacionales de diferentes perfiles, se desarrolló el IEMAC para operativizar el CCM a nuestro contexto sanitario. Se construyó una matriz considerando qué dimensiones básicas debían conformar el nuevo modelo. Se identificaron y categorizaron posibles acciones en cada dimensión, creando una taxonomía de componentes e intervenciones. Se evaluó la claridad, la pertinencia y el nivel de evidencia de cada intervención. El cuestionario resultante fue validado por otros expertos de diversas disciplinas y ámbitos. Finalmente, el instrumento IEMAC 1.0ha sido pilotado a niveles macro, meso y micro. Resultados: IEMAC es un instrumento para ser autoadministrado por organizaciones sanitarias a niveles macro, meso y micro. Consta de 6 dimensiones, 27 componentes y 80 intervenciones, cuya implantación se evalúa en una escala que combina despliegue, evaluación sistemática y orientación a la mejora. IEMAC tiene un enfoque sistémico y poblacional, integrando promoción, prevención y coordinación con servicios sociales. Conclusiones: IEMAC muestra un conjunto de intervenciones que pueden servir de hoja de ruta a decisores, gestores y clínicos interesados en construir un modelo de excelencia para la atención a pacientes crónicos, a la vez que permite que las organizaciones sanitarias conozcan su situación basal y el progreso alcanzado tras intervenciones de mejora (AU)

Objective: To present the context, aim and process of designing the Instrument for the Assessment of Chronic Care Models (Instrumento de Evaluación de Modelos de Atención ante la Cronicidad [IEMAC]), which was developed to make the conceptual framework of the chronic care model operational in the Spanish national health system. Methods: The IEMAC was developed by a series of national experts with distinct profiles of expertise using qualitative research techniques. A matrix was built with the dimensions selected as basic for the new model. In each dimension, actions were identified and categorized, creating a taxonomy of components and interventions. The clarity and appropriateness of each intervention, and the degree of evidence to support it, were assessed. The resulting questionnaire was validated by other experts from diverse disciplines and settings. Finally, the IEMAC 1.0 was piloted at macro, meso and micro levels. Results: The IEMAC is a tool to be self-administered by health organizations at macro, meso and micro levels. This instrument is composed of six dimensions, 27 components and 80 interventions, whose implementation is assessed with the aid of a scale that combines deployment, systematic evaluation, and orientation improvement. The IEMAC uses a systemic, population-based approach and integrates promotion, prevention, and coordination with social services. Conclusions: The IEMAC contains a set of interventions that can be used as a road map by decision makers, managers and clinicians interested in building a state-of-the-art chronic care model. At the same time, the IEMAC allows healthcare organizations to identify their baseline score and the progress achieved after improvement interventions (AU)

[Development of an instrument for the assessment of chronic care models]. / Desarrollo de IEMAC, un Instrumento para la Evaluación de Modelos de Atención ante la Cronicidad.

OBJECTIVE: To present the context, aim and process of designing the Instrument for the Assessment of Chronic Care Models (Instrumento de Evaluación de Modelos de Atención ante la Cronicidad [IEMAC]), which was developed to make the conceptual framework of the chronic care model operational in the Spanish national health system. METHODS: The IEMAC was developed by a series of national experts with distinct profiles of expertise using qualitative research techniques. A matrix was built with the dimensions selected as basic for the new model. In each dimension, actions were identified and categorized, creating a taxonomy of components and interventions. The clarity and appropriateness of each intervention, and the degree of evidence to support it, were assessed. The resulting questionnaire was validated by other experts from diverse disciplines and settings. Finally, the IEMAC 1.0 was piloted at macro, meso and micro levels. RESULTS: The IEMAC is a tool to be self-administered by health organizations at macro, meso and micro levels. This instrument is composed of six dimensions, 27 components and 80 interventions, whose implementation is assessed with the aid of a scale that combines deployment, systematic evaluation, and orientation improvement. The IEMAC uses a systemic, population-based approach and integrates promotion, prevention, and coordination with social services. CONCLUSIONS: The IEMAC contains a set of interventions that can be used as a road map by decision makers, managers and clinicians interested in building a state-of-the-art chronic care model. At the same time, the IEMAC allows healthcare organizations to identify their baseline score and the progress achieved after improvement interventions.

IEMAC: un Instrumento de Evaluación de los Modelos de Atención ante la Cronicidad / No disponible

No disponible

Estudio multicéntrico sobre estigma, necesidades y cuidados de personas con trastornos mentales de larga evolución / Multi-centered study on the stigma, needs, and care of persons with long-evolving mental disorder

Introducción: El estudio multicéntrico de la red MARISTAN tiene como objetivo estudiar el estigma, las necesidades y los cuidados no formales relacionados con las personas que padecen de trastornos psicóticos de larga evolución. Método: El estudio, en su fase inicial, utiliza la técnica de grupos focales con el objeto de obtener una percepción de los tres aspectos señalados desde tres perspectivas complementarias: de los usuarios, de los familiares que les atienden y de los profesionales que les brindan los cuidados formales. Discusión: Aún se encuentra en fase de análisis de resultados, sin embargo revela su importancia desde el punto de vista transcultural y de la sistematización de las diferentes fases de la investigación cualitativa (AU)