ABSTRACT
Abstract The high burden of kidney disease, global disparities in kidney care, and the poor outcomes of kidney failure place a growing burden on affected individuals and their families, caregivers, and the community at large. Health literacy is the degree to which individuals and organizations have, or equitably enable individuals to have, the ability to find, understand, and use information and services to make informed health-related decisions and actions for themselves and others. Rather than viewing health literacy as a patient deficit, improving health literacy lies primarily with health care providers communicating and educating effectively in codesigned partnership with those with kidney disease. For kidney policy makers, health literacy is a prerequisite for organizations to transition to a culture that places the person at the center of health care. The growing capability of and access to technology provides new opportunities to enhance education and awareness of kidney disease for all stakeholders. Advances in telecommunication, including social media platforms, can be leveraged to enhance persons' and providers' education. The World Kidney Day declares 2022 as the year of "Kidney Health for All" to promote global teamwork in advancing strategies in bridging the gap in kidney health education and literacy. Kidney organizations should work toward shifting the patient-deficit health literacy narrative to that of being the responsibility of health care providers and health policy makers. By engaging in and supporting kidney health-centered policy making, community health planning, and health literacy approaches for all, the kidney communities strive to prevent kidney diseases and enable living well with kidney disease.
Resumo A elevada carga da doença renal, disparidades globais no cuidado renal e desfechos ruins da insuficiência renal impõem uma sobrecarga crescente aos indivíduos afetados e suas famílias, cuidadores e a própria comunidade geral. Educação em saúde é o grau em que indivíduos e organizações têm, ou que igualmente permitem que indivíduos tenham, capacidade de encontrar, compreender e utilizar informações e serviços para tomar decisões e ações conscientes relacionadas à saúde para si e outros. Mais do que enxergar educação em saúde como um problema dos pacientes, a melhoria dessa educação depende principalmente da comunicação e educação efetiva dos profissionais em parceria com aqueles que apresentam doença renal. Para formuladores de políticas renais, educação em saúde é pré-requisito para que organizações migrem para uma cultura que coloque a pessoa no centro dos cuidados. A crescente capacidade e acesso à tecnologia oferecem novas oportunidades para melhorar educação e conscientização sobre doença renal para todas as partes interessadas. Avanços nas telecomunicações, incluindo redes sociais, podem ajudar a melhorar a educação de pessoas e provedores. O Dia Mundial do Rim declara 2022 como o ano da "Saúde dos Rins para Todos" promovendo trabalho em equipe global no avanço de estratégias para preencher a lacuna na educação e conhecimento em saúde renal. Organizações renais devem trabalhar para mudar a narrativa da educação em saúde como um problema de pacientes, para sendo responsabilidade dos profissionais e formuladores de políticas. Ao engajar-se e apoiar formulação de políticas centradas na saúde renal, planejamento de saúde comunitária e abordagens de educação em saúde para todos, comunidades renais esforçam-se para prevenir doenças renais e permitir viver bem com elas.
ABSTRACT
Abstract 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.
Resumo Viver com doença renal crônica (DRC) está associado a dificuldades para os pacientes e seus cuidadores. Capacitar os pacientes e seus cuidadores, incluindo familiares ou amigos envolvidos em seus cuidados, pode ajudar a minimizar a carga e as consequências dos sintomas relacionados à DRC para permitir uma participação efetiva na vida. Há uma necessidade de se ampliar o foco em viver bem com a doença renal e de um reengajamento na vida, com ênfase em pacientes assumindo o controle. O Comitê Diretor Conjunto do Dia Mundial do Rim (DMR) declarou 2021 como o ano de "Viver Bem com Doença Renal", em um esforço para aumentar a educação e a conscientização sobre o importante objetivo do fortalecimento do paciente e maior participação na vida. Isto exige o desenvolvimento e a implementação de medidas de desfechos relatados pelos pacientes que tenham como objetivo avaliar e abordar áreas como a participação na vida dentro dos cuidados de rotina. O assunto poderia ser apoiado por agências reguladoras como uma métrica para o atendimento de qualidade ou para apoiar as reivindicações de rotulagem para medicamentos e dispositivos. As agências de financiamento poderiam estabelecer chamadas direcionadas para pesquisas que abordem as prioridades dos pacientes. Os pacientes com doença renal e seus cuidadores devem se sentir apoiados para viver bem através de esforços conjuntos por parte das comunidades de cuidados renais, inclusive durante a pandemia. No programa de bem-estar geral para pacientes com doenças renais, a necessidade de prevenção deve ser reiterada. Ações de detecção precoce com curso prolongado de bem-estar, apesar da doença renal, após programas eficazes de prevenção secundária e terciária, devem ser promovidas. O DMR 2021 continua a exigir uma maior conscientização da importância de medidas preventivas em todas as populações, profissionais e legisladores, aplicáveis tanto aos países desenvolvidos quanto aos em desenvolvimento.
Subject(s)
Humans , Renal Insufficiency, Chronic/therapy , Health Services Accessibility , Early Diagnosis , Health Promotion , KidneyABSTRACT
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.
Subject(s)
Humans , Male , Female , Renal Insufficiency, Chronic/prevention & control , Health Promotion , Health Services Accessibility , Early Diagnosis , Renal Insufficiency, Chronic/therapy , KidneyABSTRACT
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.
ABSTRACT
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.
Subject(s)
Humans , Renal Insufficiency, Chronic/prevention & control , Health Services Accessibility , Early Diagnosis , Health Promotion , KidneyABSTRACT
La enfermedad renal crónica (ERC) será la 5.ta causa más común de años de vida perdidos para 2040. Su comienzo y progresión son, con frecuencia, prevenibles.La campaña del Día Mundial del Riñón 2020 resalta la importancia de las intervenciones preventivas. La prevención primaria debe focalizarse en modificar los riesgos y reducir la exposición a factores ambientales y nefrotoxinas. El control de la tensión arterial y de la glucemia deberían ser una de las principales intervenciones en personas con enfermedad renal pre-existente. El manejo de las comorbilidades (uremia, enfermedad cardiovascular) es altamente recomendado para evitar o postergar el uso de diálisis o trasplante renal. Con frecuencia faltan políticas específicas dirigidas a la educación, la pesquisa, el manejo y el tratamiento de la ERC.Es urgente aumentar la concientización sobre la importancia de medidas preventivas en la población, los profesionales y los responsables de políticas de salud a nivel mundial
Chronic kidney disease (CKD) is rapidly becoming the 5th most common cause of years of life lost globally by 2040. Crucially, the onset and progression of CKD is often preventable. The World Kidney Day 2020 campaign highlights the importance of preventive interventions on CKD. Primary prevention should focus on risks modification as well as reduced exposure to environmental risk factors and nephrotoxins. Blood pressure optimization and glycemic control should be one of the main interventions in persons with pre-existing kidney disease. Management of co-morbidities such as uremia and cardiovascular disease is highly recommended to avoid or delay dialysis or kidney transplantation. Globally, specific policies directed toward education and awareness about CKD screening, management and treatment are often lacking. Hence, there is an urgent need to increase the awareness of the importance of preventive measures throughout populations, professionals and policy makers around the world.