European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care: European ADPKD Forum and Multispecialist Roundtable participants
| Autor: | Harris T, Sandford R, de Coninck B, Devuyst O, Drenth JPH, Ecder T, Kent A, Gansevoort RT, Gorriz J, Ong ACM, Pirson Y, Torres VE, Budde K, Clément D, Derchi LE, Eleftheroudi M, Levtchenko E, Peters D, Van Poppel H, Vanholder R |
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| Přispěvatelé: | Cardiovascular Centre (CVC), Groningen Kidney Center (GKC) |
| Rok vydání: | 2017 |
| Předmět: |
Decision Making
INTRACRANIAL ANEURYSMS BLOOD-PRESSURE Patient-Centered Care Journal Article MANAGEMENT CKD Polycystic Kidney Humans QUALITY-OF-LIFE Special Report PERITONEAL-DIALYSIS ADPKD polycystic kidney disease RENAL REPLACEMENT THERAPY clinical practice multispecialist care Disease Management Europe Polycystic Kidney Autosomal Dominant Prognosis Quality of Life PATIENT PERSPECTIVES ERA-EDTA REGISTRY PREVALENCE Editor's Choice CLINICAL-PRACTICE Autosomal Dominant |
| Zdroj: | Nephrology Dialysis Transplantation Nephrology, Dialysis, Transplantation, 563-573. Oxford University Press STARTPAGE=563;ENDPAGE=573;ISSN=0931-0509;TITLE=Nephrology, Dialysis, Transplantation Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association-European Renal Association r-INCLIVA. Repositorio Institucional de Producción Científica de INCLIVA instname |
| ISSN: | 1460-2385 0931-0509 |
| Popis: | Autosomal dominant polycystic kidney disease (ADPKD) is a chronic, progressive condition characterized by the development and growth of cysts in the kidneys and other organs and by additional systemic manifestations. Individuals with ADPKD should have access to lifelong, multidisciplinary, specialist and patient-centred care involving: (i) a holistic and comprehensive assessment of the manifestations, complications, prognosis and impact of the disease (in physical, psychological and social terms) on the patient and their family; (ii) access to treatment to relieve symptoms, manage complications, preserve kidney function, lower the risk of cardiovascular disease and maintain quality of life; and (iii) information and support to help patients and their families act as fully informed and active partners in care, i.e. to maintain self-management approaches, deal with the impact of the condition and participate in decision-making regarding healthcare policies, services and research. Building on discussions at an international roundtable of specialists and patient advocates involved in ADPKD care, this article sets out (i) the principles for a patient-centred, holistic approach to the organization and delivery of ADPKD care in practice, with a focus on multispecialist collaboration and shared-decision making, and (ii) the rationale and knowledge base for a route map for ADPKD care intended to help patients navigate the services available to them and to help stakeholders and decision-makers take practical steps to ensure that all patients with ADPKD can access the comprehensive multispecialist care to which they are entitled. Further multispecialty collaboration is encouraged to design and implement these services, and to work with patient organizations to promote awareness building, education and research. |
| Databáze: | OpenAIRE |
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