Vivir bien con enfermedad renal por el empoderamiento del paciente y su cuidador: salud renal para todos en todos lados / Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere

Vivir con enfermedad renal crónica se asocia con penurias para el paciente y sus cuidadores. Su empoderamiento, que incluye a los familiares o los amigos comprometidos en los cuidados, puede ayudar a minimizar la carga y las consecuencias de los síntomas asociados a la enfermedad renal crónica y permitir las actividades cotidianas. Es necesario ampliar el foco sobre vivir bien con la enfermedad renal y reinsertarse en la vida, con énfasis en que los pacientes tengan sus controles.El World Kidney Day (WKD) Joint Steering Committee (Comité Directivo Conjunto del Día Mundial del Riñón) ha declarado al 2021 como el año de "Vivir bien con enfermedad renal" en un esfuerzo por aumentar la educación y la conciencia sobre el objetivo importante del empoderamiento del paciente y su participación en la vida. Esto reclama el desarrollo e implementación de evaluaciones validadas de la evolución referida por los pacientes para medir e incluir las áreas de participación en la vida en los cuidados de rutina. Esto podría ser respaldado por las agencias reguladoras como una métrica de la calidad de la atención o para respaldar las declaraciones de etiquetado de medicamentos y dispositivos. Las agencias financiadoras podrían establecer llamados dirigidos a investigar las prioridades de los pacientes. Los pacientes con enfermedad renal y sus cuidadores deberían sentirse respaldados para vivir bien mediante esfuerzos concertados de los servicios de atención renal, incluso durante las pandemias. En el programa de bienestar general para pacientes con enfermedad renal, se debe reiterar la necesidad de prevención. Se debe promover la detección precoz acompañada de un curso prolongado de bienestar a pesar de la enfermedad renal, después de programas de prevención efectiva secundaria y terciaria. El WKD 2021 continua su reclamo de aumentar la conciencia de la importancia de las medidas preventivas entre las comunidades, los profesionales y los responsables de las políticas, aplicable tanto a los países desarrollados como a aquellos en vías de desarrollo.

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize the burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including an emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with a prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere / Cómovivirbien con unaenfermedad renal a través del empoderamiento del paciente y de sucuidador: salud renal para todosentodaspartes

Abstrac Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize burden and consequences of CKD related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including emphasis on patients being in control. The World Kidney Day (WKD)Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics.In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Resumen Vivir con unaenfermedad renal crónica (ERC) se asocia con dificultadestanto para lospacientescomo para suscuidadores. Empoderar a lospacientes y a suscuidadores, incluidoslosfamiliares y amigos que losasisten, minimiza la carga y las consecuencias de lossíntomas de la ERC y posibilitaparticiparenactividadescotidianas. Esnecesarioampliar el enfoque para lograrunabuenacalidad de vida para lospacientes con nefropatías y que puedanretomarsuvidadiaria, y hacerhincapiéen que estostengan el control. El ComitéDirectivo del Día Mundial del Riñón (DMR) ha declarado el 2021 el año de "Vivirbien con unaenfermedad renal" para aumentarlosconocimientos y generarconcienciaacerca de la importancia de empoderar al paciente y de que participenen las actividadescotidianas. Estoexige el desarrollo y la implementación de criterios de valoración de losresultadoscomunicadosporlospacientes para evaluar y enfocarseenáreas de la vidacotidianaen el cuidado. Podríacontarse con el aval de organismosregulatorioscomomedida de la calidad de cuidado o para darrespuesta a losreclamosacerca del etiquetado de medicamentos y dispositivos. Las agencias de financiamientopodríanlanzarconvocatorias para investigaciones que se centrenen las prioridades de lospacientes. Los pacientes con enfermedad renal y suscuidadoresdebenrecibirapoyo para llevarunabuenavida a través del esfuerzocoordinado de las sociedades de investigación renal, incluso, duranteunapandemia. Esprecisoreiterar la importancia de la prevenciónenlosprogramasintegrales de bienestar para pacientesrenales. Deben promoverse la deteccióntemprana con evoluciónprolongada del bienestar a pesar de la enfermedad renal luego de programas de prevenciónsecundarios y terciarios. El DMR 2021 siguefomentandouna mayor concienciaacerca de la importancia de las medidaspreventivasen la población, profesionales y legisladores, que se apliquenenpaísesdesarrollados y envías de desarrollo.

Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere

Living with chronic kidney disease (CKD) is associated with hardships for patients and their care-partners. Empowering patients and their care-partners, including family members or friends involved in their care, may help minimize burden and consequences of CKD-related symptoms to enable life participation. There is a need to broaden the focus on living well with kidney disease and re-engagement in life, including emphasis on patients being in control. The World Kidney Day (WKD) Joint Steering Committee has declared 2021 the year of "Living Well with Kidney Disease" in an effort to increase education and awareness on the important goal of patient empowerment and life participation. This calls for the development and implementation of validated patient-reported outcome measures to assess and address areas of life participation in routine care. It could be supported by regulatory agencies as a metric for quality care or to support labelling claims for medicines and devices. Funding agencies could establish targeted calls for research that address the priorities of patients. Patients with kidney disease and their care-partners should feel supported to live well through concerted efforts by kidney care communities including during pandemics. In the overall wellness program for kidney disease patients, the need for prevention should be reiterated. Early detection with prolonged course of wellness despite kidney disease, after effective secondary and tertiary prevention programs, should be promoted. WKD 2021 continues to call for increased awareness of the importance of preventive measures throughout populations, professionals, and policy makers, applicable to both developed and developing countries.

Analysis of Interactive E-Health Tools on United Arab Emirates Patient Visited Hospital Websites / 대한의료정보학회지

OBJECTIVES: This study is to scrutinize the website of Seoul National University Hospital in Korea, Clinique Valmont in Switzerland, Medical Center of the University of Munich in Germany, Cleveland Clinic Abu Dhabi in the United Arab Emirates (UAE) to suggest successful communication factors to the medical service providers who deal with Middle Eastern patients. METHODS: Using content analysis and in-depth interviews, this research examines four hospitals commonly visited by Middle East patients. The four hospitals approaches to implementing interactive e-health tools on their web sites are reviewed. Four hospitals selection criterion was process by focus group interview of government officials in UAE health sectors. RESULTS: The way of providing medical information differed by hospitals that used e-health tools. The analysis of each website shows a different way providing medical information, services and education. There are important differences among hospitals. These include decision-making, planning processes and outcomes of implementing e-health tools online, as well as potential obstacles to such implementation. Thus, hospitals can learn and design effective interactive tools by applying e-health tools on their websites. CONCLUSIONS: Each website showed different interactive tools such as traditional functional tools, core e-business tools, patient support tools, visitor related tools, emerging functional tools. By applying the interactive e-health tools sets an objective view for e-health strategy and vision for the hospitals conveying information through the website. According to the type of hospitals and its location different methods of strategy should be applied. Targeting not only the patients but also the general website users will eventually improve health information accessibility.

Analysis of UK Strategy for Rare Diseases and Its Enlightenment to China / 中国药房

OBJECTIVE: To learn from the implementation experience of UK Strategy for Rare Diseases, and to provide reference for the formulation of the rare disease guarantee strategy in China. METHODS: The background, status quo and content of UK Strategy for Rare Diseases were introduced; its implementation experience was analyzed and summarized to provide enlightenment to the construction of relevant mechanism in China. RESULTS & CONCLUSIONS: British government took measure like strengthening the collection of message, improving service quality and uniting patient organization for patient empowerment, while spreading advanced disease screening and gene detection technology, developping training in diagnosis and treatment of rare disease and encouraging patients to participate in the research. The comprehensive and perfect guarantee system of rare disease had been formed. British experience is worth learning. Our country should construct comprehensive guarantee framework of rare disease, support patient organizations, improve service system for patient and strengthen rare disease research to provide health guarantee for rare disease patients.

Elders Health Empowerment Scale. Spanish adaptation and psychometric analysis / Escala de Empoderamiento sobre la Salud para Adultos Mayores. Adaptación al español y análisis psicométrico

Introduction: Empowerment refers to patient skills that allow them to become primary decision-makers in control of daily self-management of health problems. As important the concept as it is, particularly for elders with chronic diseases, few available instruments have been validated for use with Spanish speaking people. Objective: Translate and adapt the Health Empowerment Scale (HES) for a Spanish-speaking older adults sample and perform its psychometric validation. Methods: The HES was adapted based on the Diabetes Empowerment Scale-Short Form. Where "diabetes" was mentioned in the original tool, it was replaced with "health" terms to cover all kinds of conditions that could affect health empowerment. Statistical and Psychometric Analyses were conducted on 648 urban-dwelling seniors. Results: The HES had an acceptable internal consistency with a Cronbach's α of 0.89. The convergent validity was supported by significant Pearson's Coefficient correlations between the HES total and item scores and the General Self Efficacy Scale (r= 0.77), Swedish Rheumatic Disease Empowerment Scale (r= 0.69) and Making Decisions Empowerment Scale (r= 0.70). Construct validity was evaluated using item analysis, half-split test and corrected item to total correlation coefficients; with good internal consistency (α> 0.8). The content validity was supported by Scale and Item Content Validity Index of 0.98 and 1.0, respectively. Conclusions: HES had acceptable face validity and reliability coefficients; which added to its ease administration and users' unbiased comprehension, could set it as a suitable tool in evaluating elder's outpatient empowerment-based medical education programs.

Introducción: Empoderamiento se refiere a las habilidades que le permiten al paciente convertirse en responsable de tomar las decisiones para el control diario de sus problemas de salud. A pesar de ser un concepto tan importante, particularmente para adultos mayores con problemas crónicos de salud, hay pocos instrumentos accesibles que hayan sido validados para su uso en hispano-hablantes. Objetivo: Traducir y adaptar la Escala de Empoderamiento sobre la Salud (EES) para una muestra de adultos mayores hispano-hablantes y llevar a cabo su validación psicométrica. Métodos: La EES se adaptó basándose en la Escala de Empoderamiento de la Diabetes versión corta. Donde se mencionaba "diabetes" en el instrumento original, se reemplazó con el término "salud" para cubrir todos los tipos de condiciones que podrían afectar el Empoderamiento sobre la salud. Se realizaron análisis estadísticos y psicométricos sobre 648 adultos mayores residentes urbanos. Resultados: La EES tuvo una consistencia interna aceptable con un α de Cronbach de 0.89. la validez convergente se apoyó en un coeficiente de correlación de Pearson significativo entre la EES total y por ítems y la Escala General de Auto-eficacia (r= 0.77), la Escala de Empoderamiento para la Enfermedad Reumática versión Sueca (r= 0.69) y la Escala de Empoderamiento Tomando Decisiones (r= 0.70). La validez de Constructo se evaluó mediante análisis de ítem, test de las dos mitades y coeficiente de correlación ítem corregido total (α >0.8). La validez de contenido se apoyó por los Índices de Validez de Contenido para la Escala y para los ítems de 0.98 y 1.0, respectivamente. Conclusiones: La EES tuvo una validez y confiabilidad aceptables, que sumados a su facilidad de administración y comprensión simple y sin sesgos podría constituirse en una herramienta confiable para evaluar programas educativos médicos basados en el Empoderamiento de pacientes mayores ambulatorios.

A Paradigm Shift in the Healthcare Delivery System with the Emergence of the 'Ambient Care' Environment / 대한의료정보학회지

OBJECTIVE: Patients are becoming more active in communicating with doctors, forming e-communities, and participating in decision-making process of their treatment plans. However, only a few studies have examined how digitalized healthcare affects patients' and doctors' attitudes towards medical care services and deliverance structure, and the problems that might stem from these changes. In this study, we 1) explored the current changes in patients' healthcare utilization patterns and delivery structures, 2) examined the emerging behaviours and awareness of the participants, and 3) proposed how to prepare for such changes. METHODS: Face-to-face interviews and a group discussion with both Korean and US experts on consumer health informatics were conducted. Interview guidelines were developed based on reviews of recent studies on consumer health informatics. RESULTS: While the American scholars had larger expectations about the scope of the changes in the health care system induced by the digitalization of healthcare, compared to the Korean scholars, the interviewees and group discussion participants from both countries all agreed on the changes in medical environment and the increasing importance of medical information. The changes induced by the digitalization of healthcare were categorized as follows: (1) in the structure and location of healthcare service delivery, (2) in the doctor-patient communication methods, and (3) in the role of patients and increasing emphasis in empowerment. CONCLUSION: We expect that digitalized healthcare will continue to affect the doctor-patient relationship and change the deliverance structure. In order to better prepare for the fundamental paradigm shift in the healthcare system and increase the benefits to society of these changes, continuous and concerted policy efforts to protect the privacy and security of private information, alleviate the digital divide, and secure the quality of digitalized clinical knowledge will be required.