RESUMO

Abstract Historically, it takes an average of 17 years for new treatments to move from clinical evidence to daily practice. Given the highly effective treatments now available to prevent or delay kidney disease onset and progression, this is far too long. Now is the time to narrow the gap between what we know and what we do. Clear guidelines exist for the prevention and management of common risk factors for kidney disease, such as hypertension and diabetes, but only a fraction of people with these conditions are diagnosed worldwide, and even fewer are treated to target. Similarly, the vast majority of people living with kidney disease are unaware of their condition, because it is often silent in the early stages. Even among patients who have been diagnosed, many do not receive appropriate treatment for kidney disease. Considering the serious consequences of kidney disease progression, kidney failure, or death, it is imperative that treatments are initiated early and appropriately. Opportunities to diagnose and treat kidney disease early must be maximized beginning at the primary care level. Many systematic barriers exist, ranging from the patient to the clinician to the health systems to societal factors. To preserve and improve kidney health for everyone everywhere, each of these barriers must be acknowledged so that sustainable solutions are developed and implemented without further delay.

Resumo Historicamente, são necessários, em média, 17 anos para que novos tratamentos passem da evidência clínica para a prática diária. Considerando os tratamentos altamente eficazes disponíveis atualmente para prevenir ou retardar o início e a progressão da doença renal, esse período é demasiadamente longo. Agora é o momento de reduzir a lacuna entre o que sabemos e aquilo que fazemos. Existem diretrizes claras para a prevenção e o manejo dos fatores de risco comuns para doenças renais, como hipertensão e diabetes, mas apenas uma fração das pessoas com essas condições é diagnosticada mundialmente, e um número ainda menor recebe tratamento adequado. Da mesma forma, a grande maioria das pessoas que sofrem de doença renal não têm conhecimento de sua condição, pois ela costuma ser silenciosa nos estágios iniciais. Mesmo entre pacientes que foram diagnosticados, muitos não recebem tratamento adequado para a doença renal. Levando em consideração as graves consequências da progressão da doença renal, insuficiência renal ou óbito, é imperativo que os tratamentos sejam iniciados precocemente e de maneira adequada. As oportunidades para diagnosticar e tratar precocemente a doença renal devem ser maximizadas, começando no nível da atenção primária. Existem muitas barreiras sistemáticas, que vão desde o paciente até o médico, passando pelos sistemas de saúde e por fatores sociais. Para preservar e melhorar a saúde renal para todos em qualquer lugar, cada uma dessas barreiras deve ser reconhecida para que soluções sustentáveis sejam desenvolvidas e implementadas sem mais demora.

RESUMO

Historically, it takes an average of 17 years for new treatments to move from clinical evidence to daily practice. Given the highly effective treatments now available to prevent or delay kidney disease onset and progression, this is far too long. Now is the time to narrow the gap between what we know and what we do. Clear guidelines exist for the prevention and management of common risk factors for kidney disease, such as hypertension and diabetes, but only a fraction of people with these conditions are diagnosed worldwide, and even fewer are treated to target. Similarly, the vast majority of people living with kidney disease are unaware of their condition, because it is often silent in the early stages. Even among patients who have been diagnosed, many do not receive appropriate treatment for kidney disease. Considering the serious consequences of kidney disease progression, kidney failure, or death, it is imperative that treatments are initiated early and appropriately. Opportunities to diagnose and treat kidney disease early must be maximized beginning at the primary care level. Many systematic barriers exist, ranging from the patient to the clinician to the health systems to societal factors. To preserve and improve kidney health for everyone everywhere, each of these barriers must be acknowledged so that sustainable solutions are developed and implemented without further delay.

Assuntos

RESUMO

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.

RESUMO

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.

Assuntos

RESUMO

Patients with chronic kidney disease (CKD) frequently experience unpleasant symptoms. These can be gastrointestinal (constipation, nausea, vomiting and diarrhoea), psychological (anxiety and sadness), neurological (lightheadedness, headache and numbness), cardiopulmonary (shortness of breath and oedema), dermatological (pruritus and dry skin), painful (muscle cramps, chest pain and abdominal pain) or involve sexual dysfunction, sleep disorders and fatigue. These symptoms often occur in clusters, with one of them as the lead symptom and others as secondary symptoms. Uraemic toxins (also called uremic toxins) are often considered to be the main cause of CKD-associated symptom burden, but treatment of uraemia by dialysis often fails to resolve them and can engender additional symptoms. Indeed, symptoms can be exacerbated by comorbid conditions, pharmacotherapies, lifestyle and dietary regimens, kidney replacement therapy and ageing. Patients with kidney disease, including those who depend on dialysis or transplantation, should feel actively supported in their symptom management through the identification and targeting of unpleasant symptoms via a tailored palliative care approach. Such an approach may help minimize the burden and consequences of kidney disease, and lead to improved patient outcomes including health-related quality of life and better life participation.

Assuntos

RESUMO

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.

Assuntos

RESUMO

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.

Assuntos

RESUMO

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.

Assuntos

RESUMO

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.

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.

Assuntos

RESUMO

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.

Assuntos