nidНефрология и диализNephrology and Dialysis1680-44222618-9801Российское диализное общество10.28996/2618-9801-2021-1-9-18nid-4Research ArticleВСЕМИРНЫЙ ДЕНЬ ПОЧКИWORLD KIDNEY DAYРасширение прав и возможностей пациентов и лиц, осуществляющих уход - это путь к нормальной жизни с болезнью почек: здоровые почки всем и вездеLiving well with kidney disease by patient and care-partner empowerment: Kidney health for everyone everywhereКалантар-ЗадеКамьярKamyarKalantar-Zadehkkz@uci.eduЛиФилип Кам-ТаоPhilipKam-Tao Liphilipli@cuhk.edu.hkТантисаттамоЭламолEkamolTantisattamonoemail@neicon.ruКумарасвамиЛатхаLathaKumaraswaminoemail@neicon.ruЛиакопулосВасилиосVassiliosLiakopoulosnoemail@neicon.ruЛуиСиу-ФайSiu-FaiLuinoemail@neicon.ruУласиИфеомаIfeomaUlasinoemail@neicon.ruАндреолиШаронSharonAndreolinoemail@neicon.ruБалдуччиАлессандроAlessandroBalduccinoemail@neicon.ruДюпюиСофиSophieDupuisnoemail@neicon.ruХаррисТэссTessHarrisnoemail@neicon.ruГрадскиАннаAnneHradskynoemail@neicon.ruНайтРичардRichardKnightnoemail@neicon.ruКумарСаджайSajayKumarnoemail@neicon.ruНгМэггиMaggieNgnoemail@neicon.ruПойдевинЭлисAlicePoidevinnoemail@neicon.ruСаадиГамальGamalSaadinoemail@neicon.ruТонгЭлисонAllisonTongnoemail@neicon.ruМеждународная федерация почечных фондов - Всемирный почечный альянс, Калифорнийский университетРоссияThe International Federation of Kidney Foundation - World Kidney Alliance (IFKF-WKA), Division of Nephrology and Hypertension and Kidney Transplantation, University of California IrvineRussian FederationИсследовательский центр им. Кэрол и Ричарда Ю, Больница принца Уэльского, Китайский университет ГонконгаРоссияDepartment of Medicine and Therapeutics, Carol & Richard Yu PD Research Centre, Prince of Wales Hospital, Chinese University of Hong KongRussian FederationКалифорнийский университетРоссияDivision of Nephrology, Hypertension and Kidney Transplantation, Department of Medicine, University of California Irvine School of MedicineRussian FederationФонд ТанкерРоссияTanker FoundationRussian FederationГоспиталь Aмериканской эллинской образовательной ассоциации, Университет им. Аристотеля в СалоникахРоссияDivision of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital, Aristotle University of ThessalonikiRussian FederationШкола общественного здравоохранения и первичной медико-санитарной помощи «Жокей-клуб», Китайский университет ГонконгаРоссияHong Kong Kidney Foundation and the International Federation of Kidney Foundations - World Kidney Alliance,The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong KongRussian FederationУниверситет НигерииРоссияRenal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-OzallaRussian FederationБольница им. Джейма Уиткомба Райли для детей, Медицинская школа Университета ИндианыРоссияJames Whitcomb Riley Hospital for Children, Indiana University School of MedicineRussian FederationИтальянский почечный фондРоссияItalian Kidney FoundationRussian FederationГоловной офис инициативы «Всемирный день почки»РоссияWorld Kidney Day OfficeRussian FederationБлаготворительная организация для пациентов с поликистозной болезнью почекРоссияPolycystic Kidney Disease CharityRussian Federationоловной офис инициативы «Всемирный день почки»РоссияWorld Kidney Day OfficeRussian FederationАмериканская ассоциация пациентов с заболеваниями почекРоссияAmerican Association of Kidney PatientsRussian FederationПочечный фонд ГонконгаРоссияHong Kong Kideny FoundationRussian FederationКаирский университетРоссияNephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo University, GizaRussian FederationСиднейский университет, Сиднейская школа общественного здравоохраненияРоссияSydney School of Public Health, The University of SydneyRussian Federation202121062024231918Copyright © Калантар-Заде К., Ли Ф.К., Тантисаттамо Э., Кумарасвами Л., Лиакопулос В., Луи С., Уласи И., Андреоли Ш., Балдуччи А., Дюпюи С., Харрис Т., Градски А., Найт Р., Кумар С., Нг М., Пойдевин Э., Саади Г., Тонг Э., 20242024Калантар-Заде К., Ли Ф.К., Тантисаттамо Э., Кумарасвами Л., Лиакопулос В., Луи С., Уласи И., Андреоли Ш., Балдуччи А., Дюпюи С., Харрис Т., Градски А., Найт Р., Кумар С., Нг М., Пойдевин Э., Саади Г., Тонг Э.Kamyar K., Philip K.L., Ekamol T., Latha K., Vassilios L., Siu-Fai L., Ifeoma U., Sharon A., Alessandro B., Sophie D., Tess H., Anne H., Richard K., Sajay K., Maggie N., Alice P., Gamal S., Allison T.Данная работа распространяется под лицензией Creative Commons Attribution 4.0.This work is licensed under a Creative Commons Attribution 4.0 License.https://journal.nephro.ru/jour/article/view/4

Жизнь с хронической болезнью почек (ХБП) сопряжена с трудностями как для самих пациентов, так и для лиц, осуществляющих уход за ними. Расширение прав и возможностей пациентов и лиц, осуществляющих уход, в том числе членов семьи или друзей, помогающих оказывать помощь, позволит минимизировать тяжесть проявлений и последствания ХБП, и таким образом обеспечит условия для полноценной жизни пациентов. Необходимо сфокусироваться на проблеме достойного существования и возвращения к обычной жизни пациентов с ХБП и акцентировать внимание на контроле за их состоянием. Объединенный организационный комитет Всемирного дня почки, стремясь повысить уровень образования и осведомленности о такой важной цели как расширение прав и возможностей пациентов и их полноценной жизни, сделал девизом 2021 года лозунг «Нормальная жизнь с болезнью почек». Для оценки полноценности жизни лиц, страдающих заболеваниями почек, требуется разработка и внедрение в рутинную практику валидированных эффективных критериев, основанных на результатах опроса пациентов. Эти критерии могут быть использованы регуляторными органами в качестве критериев качества оказания медицинской помощи или для маркировки требований к лекарственным препаратам и медицинским устройствам. Финансирующие организации могли бы проводить целевые исследования, учитывающие приоритеры пациентов. Благодаря согласованным усилиям сообществ, оказывающих нефрологическую помощь, пациенты с заболеваниями почек и лица, осуществляющие уход, должны ощущать поддержку в стремлении к нормальной жизни, в том числе в условиях пандемии. Необходимо еще раз подчеркнуть значение профилактики в общей оздоровительной программе для пациентов с заболеваниями почек. Наряду с эффективными программами вторичной и третичной профилактики следует пропагандировать раннюю диагностику с длительным курсом мероприятий по улучшению состояния здоровья пациентов несмотря на наличие заболевания почек. Глобальная инициатива «Всемирный день почки 2021» продолжает призывать население, специалистов и политиков к повышению осведомленности о важности профилактических мероприятий, применимых как в развитых, так и развивающихся странах.

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 policymakers, applicable to both developed and developing countries

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The authors declare that there are no conflicts of interest present.