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European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care

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Abstract
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.
Keywords
RENAL REPLACEMENT THERAPY, QUALITY-OF-LIFE, ERA-EDTA REGISTRY, INTRACRANIAL ANEURYSMS, PATIENT PERSPECTIVES, PERITONEAL-DIALYSIS, CLINICAL-PRACTICE, BLOOD-PRESSURE, PREVALENCE, MANAGEMENT, ADPKD, CKD, clinical practice, multispecialist care, polycystic kidney, disease

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MLA
Harris, Tess, Richard Sandford, Brenda de Coninck, et al. “European ADPKD Forum Multidisciplinary Position Statement on Autosomal Dominant Polycystic Kidney Disease Care.” NEPHROLOGY DIALYSIS TRANSPLANTATION 33.4 (2018): 563–573. Print.
APA
Harris, T., Sandford, R., de Coninck, B., Devuyst, O., Drenth, J. P., Ecder, T., Kent, A., et al. (2018). European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care. NEPHROLOGY DIALYSIS TRANSPLANTATION, 33(4), 563–573.
Chicago author-date
Harris, Tess, Richard Sandford, Brenda de Coninck, Olivier Devuyst, Joost PH Drenth, Tevfik Ecder, Alastair Kent, et al. 2018. “European ADPKD Forum Multidisciplinary Position Statement on Autosomal Dominant Polycystic Kidney Disease Care.” Nephrology Dialysis Transplantation 33 (4): 563–573.
Chicago author-date (all authors)
Harris, Tess, Richard Sandford, Brenda de Coninck, Olivier Devuyst, Joost PH Drenth, Tevfik Ecder, Alastair Kent, Ron T Gansevoort, Jose Luis Gorriz, Albert CM Ong, Yves Pirson, Vicente E Torres, Klemens Budde, Denis Clement, Lorenzo E Derchi, Marianna Eleftheroudi, Elena Levtchenko, Dorien Peters, Hendrik Van Poppel, and Raymond Vanholder. 2018. “European ADPKD Forum Multidisciplinary Position Statement on Autosomal Dominant Polycystic Kidney Disease Care.” Nephrology Dialysis Transplantation 33 (4): 563–573.
Vancouver
1.
Harris T, Sandford R, de Coninck B, Devuyst O, Drenth JP, Ecder T, et al. European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care. NEPHROLOGY DIALYSIS TRANSPLANTATION. 2018;33(4):563–73.
IEEE
[1]
T. Harris et al., “European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care,” NEPHROLOGY DIALYSIS TRANSPLANTATION, vol. 33, no. 4, pp. 563–573, 2018.
@article{8569349,
  abstract     = {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.},
  author       = {Harris, Tess and Sandford, Richard and de Coninck, Brenda and Devuyst, Olivier and Drenth, Joost PH and Ecder, Tevfik and Kent, Alastair and Gansevoort, Ron T and Gorriz, Jose Luis and Ong, Albert CM and Pirson, Yves and Torres, Vicente E and Budde, Klemens and Clement, Denis and Derchi, Lorenzo E and Eleftheroudi, Marianna and Levtchenko, Elena and Peters, Dorien and Van Poppel, Hendrik and Vanholder, Raymond},
  issn         = {0931-0509},
  journal      = {NEPHROLOGY DIALYSIS TRANSPLANTATION},
  keywords     = {RENAL REPLACEMENT THERAPY,QUALITY-OF-LIFE,ERA-EDTA REGISTRY,INTRACRANIAL ANEURYSMS,PATIENT PERSPECTIVES,PERITONEAL-DIALYSIS,CLINICAL-PRACTICE,BLOOD-PRESSURE,PREVALENCE,MANAGEMENT,ADPKD,CKD,clinical practice,multispecialist care,polycystic kidney,disease},
  language     = {eng},
  number       = {4},
  pages        = {563--573},
  title        = {European ADPKD Forum multidisciplinary position statement on autosomal dominant polycystic kidney disease care},
  url          = {http://dx.doi.org/10.1093/ndt/gfx327},
  volume       = {33},
  year         = {2018},
}

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