Quality of care through the eyes of the patient in a Spanish inflammatory bowel disease unit.

INTRODUCTION: the quality of care perceived by the patient is a fundamental aspect of the accreditation program of inflammatory bowel disease (IBD) units. The aim of this study was to evaluate the quality of healthcare from the patient's point of view in an IBD Unit. METHODS: consecutive patients diagnosed with Crohn's disease or ulcerative colitis that attended the IBD Unit of the Hospital Universitario de La Princesa and anonymously filled out the Quality of Care through the Patient's Eyes - Inflammatory Bowel Disease (QUOTE-IBD) questionnaire were included in the study. QUOTE-IBD is a validated 23-item questionnaire, which explores the Importance given by patients to care aspects and the Performance of medical practices and healthcare workers. Each item assesses eight care dimensions: Competence, Autonomy, Courtesy, Accessibility, Information, Costs, Continuity of care and Accommodation. RESULTS: one hundred patients from our IBD Unit completed the QUOTE-IBD. In terms of dimensions, patients gave the highest Importance score to aspects related to Information (8.24), followed by Competence in IBD care (7.86). Performance scores ranged from 0.4 for Continuity of care to 0.01 for Cost. CONCLUSIONS: the application of the QUOTE-IBD questionnaire to assess the level of satisfaction of our patients with the quality of healthcare provided by our unit has allowed us to identify areas of improvement in the Information and Continuity of care dimensions. The highest score according to the perspective of our patients was obtained in the Competence in care dimension.

Current state, control, impact and management of rheumatoid arthritis according to patient: AR 2020 national survey.

OBJECTIVES: To analyse current status, control and impact of RA on patients' lives as well as the management of RA symptoms. METHODS: A structured anonymous online questionnaire was designed and sent to patients with RA, aged 18 years or above living in Spain. Participants were invited though different strategies: 1) ConArtritis and related patients associations; 2) Patients participating in the platform www.in-pacient.es; 3) Links from ConArtritis website and open social networks. Sociodemographic and clinical variables, as well as others related to the objectives were collected. A descriptive analysis was performed. RESULTS: We analysed 882 RA patients, 89% women, with a median age of 52 years, 31.9% disease duration <5 years. They reported a mean pain and patient global disease score (0-10) of 5.1 and 4.9 respectively. The rate of patients with many difficulties or inability to perform daily tasks varied from 6.4% to 49.2%. Based on the activity index 56.8% of patients reported high activity. We found a great or severe impact on the emotional well-being in 31.5% of patients, and of 29.2% in the workplace or academic setting. A total of 87.9% are taking some medication for RA, and 17.3% are little/not satisfied with them. In addition, 67.1% take conventional synthetic disease modifying drugs (DMARDs), and 45.9% biological therapies including biosimilars and small molecules. CONCLUSIONS: The current impact of RA on patients' daily lives remains very high. A significant number of patients are not taking DMARDs (conventional synthetic and/or biologics) despite high activity.

Current State, Control, Impact and Management of Rheumatoid Arthritis According to Patient: AR 2020 National Survey. / Estado, control, impacto y manejo actual de la artritis reumatoide según los pacientes: encuesta nacional AR 2020.

OBJECTIVES: To analyse current status, control and impact of RA on patients' lives as well as the management of RA symptoms. METHODS: A structured anonymous online questionnaire was designed and sent to patients with RA, aged 18 years or above living in Spain. Participants were invited though different strategies: 1) ConArtritis and related patients associations; 2) Patients participating in the platform www.in-pacient.es; 3) Links from ConArtritis website and open social networks. Sociodemographic and clinical variables, as well as others related to the objectives were collected. A descriptive analysis was performed. RESULTS: We analysed 882 RA patients, 89% women, with a median age of 52 years, 31.9% disease duration <5 years. They reported a mean pain and patient global disease score (0-10) of 5.1 and 4.9 respectively. The rate of patients with many difficulties or inability to perform daily tasks varied from 6.4% to 49.2%. Based on the activity index 56.8% of patients reported high activity. We found a great or severe impact on the emotional well-being in 31.5% of patients, and of 29.2% in the workplace or academic setting. A total of 87.9% are taking some medication for RA, and 17.3% are little / not satisfied with them. In addition, 67.1% take conventional synthetic disease modifying drugs (DMARDs), and 45.9% biological therapies including biosimilars and small molecules. CONCLUSIONS: The current impact of RA on patients' daily lives remains very high. A significant number of patients are not taking DMARDs (conventional synthetic and / or biologics) despite high activity.

Estado, control, impacto y manejo actual de la artritis reumatoide según los pacientes: encuesta nacional AR 2020 / Current State, Control, Impact and Management of Rheumatoid Arthritis According to Patient: AR 2020 National Survey

Objetivos: Analizar el estado, el control, el impacto y el manejo actual de la artritis reumatoide (AR) según los pacientes. Métodos: Encuesta para la que se envió un cuestionario estructurado, anónimo, en formato electrónico a pacientes adultos con AR residentes en España, a través de: 1) Con Artritis o sus asociaciones; 2) pacientes de la plataforma www.in-pacient.es, y 3) vínculos desde la página web de Con Artritis y redes sociales abiertas. Se recogieron variables sociodemográficas y clínicas, y otras relacionadas con los objetivos propuestos. Se realizó un análisis descriptivo. Resultados: Analizamos a 882 pacientes, 89% mujeres, con una edad mediana de 52 años, 31,9% AR <5 años de evolución. El dolor y la valoración global de la enfermedad actuales medios (0-10) fueron de 5,1 y 4,9, respectivamente. El porcentaje de pacientes con muchas dificultades o imposibilidad para realizar tareas cotidianas varió del 6,4 al 49,2%. Con base en el índice de actividad, el 56,8% de los pacientes presenta alta actividad. Los pacientes refieren mucho impacto o impacto grave del 31,5% a nivel emocional, o del 29,2% en el ámbito laboral o académico. El 87,9% sigue algún tratamiento para la AR y el 17,3% está poco/nada satisfecho con el mismo. El 67,1% toma fármacos modificadores de la enfermedad (FAME) sintéticos convencionales y el 45,9%, terapias biológicas incluyendo biosimilares y pequeñas moléculas. Conclusiones: El impacto actual de la AR en la vida del paciente sigue siendo muy alto. Un porcentaje significativo de pacientes no sigue un tratamiento con FAME (sintéticos convencionales o biológicos) a pesar de su actividad.(AU)

Objectives: To analyse current status, control and impact of RA on patients’ lives as well as the management of RA symptoms. Methods: A structured anonymous online questionnaire was designed and sent to patients with RA, aged 18 years or above living in Spain. Participants were invited though different strategies: 1) ConArtritis and related patients associations; 2) Patients participating in the platform www.in-pacient.es; 3) Links from ConArtritis website and open social networks. Sociodemographic and clinical variables, as well as others related to the objectives were collected. A descriptive analysis was performed. Results: We analysed 882 RA patients, 89% women, with a median age of 52 years, 31.9% disease duration <5 years. They reported a mean pain and patient global disease score (0-10) of 5.1 and 4.9 respectively. The rate of patients with many difficulties or inability to perform daily tasks varied from 6.4% to 49.2%. Based on the activity index 56.8% of patients reported high activity. We found a great or severe impact on the emotional well-being in 31.5% of patients, and of 29.2% in the workplace or academic setting. A total of 87.9% are taking some medication for RA, and 17.3% are little / not satisfied with them. In addition, 67.1% take conventional synthetic disease modifying drugs (DMARDs), and 45.9% biological therapies including biosimilars and small molecules. Conclusions: The current impact of RA on patients’ daily lives remains very high. A significant number of patients are not taking DMARDs (conventional synthetic and / or biologics) despite high activity.(AU)

Calidad de la asistencia sanitaria desde la perspectiva del paciente en una unidad de enfermedad inflamatoria intestinal / No disponible

INTRODUCCIÓN: la calidad percibida por los pacientes es un aspecto fundamental en los programas de acreditación de las unidades. Nuestro objetivo fue evaluar la calidad de la asistencia sanitaria desde la perspectiva de los pacientes en una unidad de enfermedad inflamatoria intestinal (EII). MATERIAL Y MÉTODOS: se incluyeron pacientes consecutivos diagnosticados de enfermedad de Crohn o colitis ulcerosa en seguimiento en la Unidad de EII de nuestro hospital, quienes completaron anónimamente el cuestionario "Calidad de la asistencia sanitaria desde la perspectiva del paciente" (QUOTE-IBD), un cuestionario validado que consta de 23 ítems y evalúa la Importancia que los pacientes otorgan a aspectos de la asistencia sanitaria y el Desempeño en las prácticas médicas y del personal sanitario. Cada ítem evalúa ocho dimensiones de la calidad de la asistencia: Competencia en la asistencia, Autonomía, Cortesía, Accesibilidad, Información, Costes, Continuidad de la asistencia e Instalaciones. RESULTADOS: cien pacientes con EII de nuestra unidad completaron el cuestionario. En cuanto a las dimensiones, los pacientes otorgaron la puntuación de Importancia más alta a Información (8,24), seguido de Competencia en la asistencia (7,86). Las puntuaciones de Desempeño oscilaron entre 0,4 para Continuidad de la asistencia hasta 0,01 para Costes. CONCLUSIONES: la aplicación del cuestionario QUOTE-IBD para evaluar el grado de satisfacción de nuestros pacientes con la calidad de la asistencia sanitaria de nuestra unidad nos ha permitido identificar áreas de mejora en las dimensiones de Información y Continuidad de la asistencia. La mayor puntuación según la perspectiva de nuestros pacientes la obtuvimos en la dimensión Competencia en la asistencia

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